The number 13 and other frighting stories

It is only fitting that in honor of all hallows eve Chloe managed to weigh 13 lb. 13 oz! OOOooooo such bad good luck! I mean any other time it would just have to be bad luck, but not now right?! Very appropriate, weigh to go Chloe! (Get it? ;) Another weigh in, another day of the doctor saying okay see you next week, but I am threatening if she doesn't gain next week, in the hospital she goes. The doc thinks the threatening is working so she makes sure to do it every time we leave the office. Maybe it is working because she has gained about a pound in a little over two weeks. The feeding therapy and the new mixture in the bottle seems to be working. I mean it is going to be a slow process with the therapy, but I really like the therapists and she uses so many good ideas. But Chloe doesn't like eating anything but butter, butter with a few crackers or bread crumbs thrown in. I mean I am not thrilled my daughter only eats butter and a bottle of mainly Pediasure, but at this point whatever goes down her throat without a fight seems a relief to me. Of course it drives me crazy, but it is putting calories on her, it is helping her brain grow (I hope). After a knock down drag out fight with Early Intervention, I have come out of the battle with getting PT and feeding therapy covered by Early Steps. This is a huge victory considering our insurance doesn't cover any of these therapies and Early Steps was only going to cover one thing, whatever  Chloe needed most at any given time. We are forking out our own money to make sure she gets OT, which is totally fine and we are so happy she will be getting all of these, when I worried she may not. It was also nice in Illinois the therapist would come to your house... here I will be driving, four times a week to Miami, but it is a luxury I can give up if it means she gets the help she needs. RSV season is upon us again, and it sure would be nice to keep Chloe healthy for one more winter. It has been so nice being able to take her out of the house, go to the grocery store, go to a friends house and just get out. I mean I still sanitize everything like crazy and not a day goes by I don't wash my hands fifty times... but I have almost forgotten the days of quarantine! I don't think it will be as extreme as last winter, in fact I have no idea exactly what the boundaries should be. As I was reminiscing about last winter, I was also thinking about Chloe's beginning. I mean it is true, I had her early, she weighed small, but there is more to the story. I think back to then realizing there was so much I didn't know. So much I didn't know about where life was taking me. All I knew was in my pregnancy book it said when I reached 24 weeks it was the point where technically my baby could survive out of  the womb. Um....but there is so much more to it than that. On my preemie support group there are so many stories, so many different stories, everyone's is different.  Every day past 24 weeks counts. There is such a huge difference between a 24 weeker and let's say, a 27 weeker or a 30 weeker, 32 weeker or even a 25 weeker. I mean your chance goes up something like 25% if you could just be born at 25 weeks than a week before at 24 weeks. It might be a taboo subject, but Evan and I were allowed to choose no care for Chloe when she was born. The doctor came in, gave us the facts, and then said, you choose, the only time I give people the choice is at 24 weeks. Evan and I looked at each other and decided to look at situation when it came. We, just, if you will, wanted Chloe to decide. What clues would she give us that her time here was not meant to be? Would it be a grade 4 brain bleed? Would it be that she was too small? They had told me that if she weighed less than a pound, they would not have the equipment to save her. But somehow she came out kicking and screaming to survive and gave many clues she was here and she was going to stay! Breathed on her own for 3 days, no brain bleeds-ever, and somehow the medical equipment fit (even though she did lose a toe because it barely fit...) I have no message here, no words of advice, this is just my experience and I think many people would not know this part of the story. I wanted her to fight to live and she did, I didn't have to make the decision, so I am lucky. I think about all the medical equipment she relied on, and doctors she relied on, and how freaking amazing it was she survived, not only survived but thrived.  What a crazy life, and sometimes I still get angry that this happened to Chloe, but most of the time I am loving the little girl I have. She is so cool. Even with all the work, I look at her and wish I could be as happy as she is all the time! (Except for when she is in low lighting restaurants with red  lights, just found that out recently.) A friend gave me a little art piece that has the saying,  " While we try to teach our children all about life,  our children teach us what life is all about." Just Perfect. My grandfather passed a few weeks ago. He was quite a character and will be missed. The whole year I lived in Edwardsville he did not get to see Chloe. He was not walking well and my grandmother smokes in her house. I didn't want to take Chloe there because of her lungs. But a few days before he passed I took Chloe in to see him for a few minutes, and he gave a big smile and talked to her. I am so happy he was able to see her and sad she will not know him. I will have lots of great stories for her though, like how he told me he was just going to call Evan Kevin because he would never remember Evan, and he did the whole time I dated and have been married to Evan.