We are on a roll....!

Chloe and I finished our first official 5k race together on Saturday! Some of our friends and I got up early to run the Annual Key Biscayne Lighthouse run, and it was so much fun! Chloe is really starting to like her jogging stroller! Most runs I find her half asleep when I go to get her out, or she is banging Sophie on the side of the stroller the whole time. It is so fun this is something I can do with her. Anyway, I hope many runs are in our future. So not only are we are on a roll with getting back in shape, but Chloe is getting back in shape with PT and feeding therapy! We start OT this week! Whew! What a huge relief it is that we are on the right track finally. I was starting to have panic attacks every time I thought about her not getting help since July. Love, love. love Chloe's therapist for PT and the therapist for feeding. Feeding therapy is so interesting. The things they come up with to get kids to be less sensitive with their mouths and to learn to chew is pretty cool. Some days she does really well, and will eat some rice cereal, and other days not so well. It is a slow process. Chloe's PT has a preemie herself, a preemie who had lots of problems, so she has first hand experience, which I think gives her a very kind, soothing way in which she handles and works with Chloe. She is close to sitting up, but gravity took a toll on Chloe being out of the womb so early, so she has some muscles to work and some things that need to be better aligned with her body. During the PT sessions you can't even tell Chloe is working. The PT just pushes on her body in different ways as Chloe plays. Then Chloe falls asleep after and sleeps for hours because she has worked so hard. Pretty cool. But her schedule is all messed up with time spent in the car going to appointments and with the time change. I had no idea the time change would change so much! Any other moms notice this? The weather is finally getting beautiful down her. It is like spring in the Midwest, everyone is in a good mood and looking for things to do outside. It has made Chloe's and my life much more fun. We were able to take her out on a boat ride, which she loved. We were able to take her to the beach, which she loves. Every Saturday we go to the farmer's market and have lunch with friends. We took Chloe on a trail in the Everglades. Florida is wonderful in the winter. Except for the brown widow outbreak in our basement screened in porch, we are ready to be outside all the time. Yes, I said brown widow's, just like the black but brown with stripes.  I spent my whole life knowing I just had to be weary of two spiders, the brown recluse and black widow and now I find out there are many varieties of the black. I thing spiders get a bad rap. They kill pests, they are beneficial and I am not for killing spiders, but I am just not sure I can have them around Chloe. I don't mean just one or two. I can go out at night and at least find 5 right away. So the new thing is figuring out how to get rid of them down there. We also have a gang of raccoons breaking into our screened in porch at night. I was coming home and going up the stairs and one jumped over my head, no joke, to get away. Evan wakes up at night to find them rummaging through our diaper trash can we keep on the porch. So that is what is keeping them coming back. We will have a lame Thanksgiving without family this year. We waited too long to get tickets to go anywhere and it would be nice to keep Chloe healthy for one more winter, not expose her to airports and lots of people. Have a great Thanksgiving, enjoy the food, family and friends! One of these days Chloe is going to love turkey!

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.

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.

And so it goes...

The picture of Chloe is of one of her favorite spots, the hammock. She loves to fall asleep in it and it seems to calm her when she gets a little fussy. Next week, Cystic Fibrosis test on Monday, ultrasound on Tuesday, eye exam on Thursday, somewhere in between fit in feeding therapy, (hopefully) living in an appointment filled life all due to Chloe's eating catastrophe, disaster, tragedy, calamity, those are all the words we could come up with to describe the terrible eating habits of my daughter. Okay, it might be a bit of an exaggeration.  She is actually doing a little bit better and maybe taking 1/3 of a bottle while awake, on good days, when the sun is in the East, while a white bird is flapping his wings near by and it is raining on the West side of Miami. In those conditions she will eat a little while awake. But the other times, we carefully time eating times with sleeping times. She also has been tolerating eating the Yo Baby yogurt that I attempt to feed her everyday. No, but really, I have to give Chloe some credit. She does seem to maybe, swallow some yogurt occasionally. She is really into putting her mouth on a cup. So, I have been trying to help her drink from a big girl cup. She is really good at blowing bubbles this way. It should improve her performance in her water babies class. I did have visions of making Chloe wonderful creations of baby foods. I dreamt of the gourmet cuisines of sweet potato puree with an apple reduction, with banana-avocado swirls. My daughter would have no appreciation for this. It can be difficult, and I find it emotionally hard. I know there are others out there who relate, and have made it passed this stage and in those I give hope that someday this will pass. I really do believe it will. Like I said, I feel she is doing a bit better. Today, Granny Janny, who is in town, gave her a slice of peach. Chloe devoured the juices and seemed to enjoy it! I was very pleased! Busy week, but at least we might have some new information from all these tests! Early Intervention has been a bit of a headache too. It is really too bad that it seems in most of the country there are long waiting lists for children who need help. It seems I had the Cadillac plan in Illinois, and I might have moved down to the Pinto plan in Florida. But we will see, they have snuck me in early for feeding therapy. So anxious for this to start. On to more fun subjects! Chloe is a very determined girl now days (I ask, when has she not been?) But she is determined to get toys way across the rug when she is not crawling yet. She will scoot, roll, crab walk, screech, to get something she wants. Pretty funny. She loves her water babies class at the Y. She is the youngest from her age to 3 years. She really is the only kid who doesn't scream the whole class. We can be singing, "Old Mcdonald had a pool..."and kids are screaming, as we are trying to sing over them. But Chloe just splashes around and really enjoys it, she also is into trying to lick the water. It has been nice having Granny Janny here, I actually had a chance to do something I once took for granted, getting my hair done. We also went to the beach today on Key Biscayne and it was a beautiful day! The water was warm and Chloe for sure digs the ocean. A true beach baby now. Well, the little one has a birthday coming up. It was on this day last year I went into the hospital for the start of the roller coaster ride, but also the start of something so wonderful and hard all at the same time in my life.

5 ounces??!! Wha Wha Wha What??!

Amazingly, today at the doctors Chloe weighed 5 more ounces than she did 2 1/2 weeks ago! I don't know how it is possible, the way she has been eating! But I will take a gain over a loss or a stay the same any day! I kept looking at the scale after the nurse said 12 lb. 9.5 ounces, and then when the nurse left I kept putting her back on the scale to weigh her again, and again... I am like, holy moly Chloe! I don't know how you did it but you did it! As a good friend of mine's dad said, I wish people would get that excited when I gained weight! We have been sneaking in some more rice per bottle... but she has been eating half the minimum of what the GI doc wanted her to eat! Oh my, you have this weight obsession after having a micro-preemie baby, as if we girls don't have enough pressure! I have never been so ruled by numbers and scales in my whole life. 5 ounces, not such a huge weight gain, but it's a gain. She did have a miraculous day on Sunday where she ate double what she had been eating days before, so I keep feeling like maybe she is turning the corner, feeling better, and will start eating better. I learned never to have too high of hopes though, to precede with caution. Lesson from the NICU. Since I was once a half glass full kinda girl, it is sad for me to think this way, but one has to guard their heart and be prepared for the worst.  Ah, the scars of having a baby at 24 weeks and then a child in the NICU... On top of that we have some anticipation building in the house! Hurricane Irene heading this way! Might build up to Category 3! Haven't survived a cat 3 yet! My husband keeps singing, "Come on Irene," which is making this hurricane have association to a few frat parties in college and where I was in the 80's. I am a little on the fence about how I feel about this one, but hurricanes can't help but bring out this excitement with a little bit of the unknown fear attached. I do have a little bit of adrenaline junkie in me and hurricanes scream adrenaline. I mean there is a reason people who live in hurricane areas have what is called, hurricane parties. It brings out some human emotion or need to have a good time on what could be your last night on the planet, or to want to feel the danger of it being the last night...or well whatever. Reminds me of a story of another hurricane preparation... In Hatteras one year I made the 5 o'clock news while shopping at the grocery store. The news caster asked me what I was doing to prepare for the hurricane, buying water, stocking up on batteries. The camera scans down to my cart which is full of beer and chips I was picking up for the hurricane party. Oops. Yeah I said, I am stocking  up on water, haven't made it to that aisle yet. Preparing for this one is a little different, I mean having a kiddo and all. I mean how much excitement can one have in their life, I mean she is not even a year old! My dad flew down to the rescue a couple days ago to help with the Chloe being sick, and the not eating thing. She has improved since he got here, so maybe that was the magic trick. I mean, my dad is an ol' boy scout through and through so he spent quite a bit of time at Home Depot today getting ready for this storm. Let's just say we have flash light battery power for a few years, a flash light for every room in the house, including the bathroom, laundry room and closets. This is his first hurricane, so hopefully it will be a light hearted storm, no one will get hurt or suffer and we can just enjoy surviving it! Meanwhile my mom is have daily panic attacks about this whole scenario. We are lucky enough to not only have my dad for some help this week, but Evan's mom is coming in, in a couple of weeks. Always nice to have extra help and have family around. I am having some withdrawal of the Caring Bridge site. I didn't write on it too much lately, but I found it so nice knowing family and friends were reading and keeping up with Chloe. I could easily feel the support and I loved being able to read the people's comments. But I just felt the site was for the medically critical and even though the saga continues, there needed to be a stopping point. The site offers a nice option  which is turning all the journals, comments, tributes into a book. For Chloe's birthday she will get what mom and dad, and a whole bunch of friends and family wrote about her in her first year of life. I will make sure it doesn't get torn or eaten until she is old enough to appreciate it. (She does like to put books in her mouth, not food, but books.)I hope if some of the followers of Caring Bridge are on here, you continue to comment or become a follower of the blog! xoxo!

pneumonia schmonia

It has been a crazy couple of days being parents. We traveled to Oregon over the weekend for a friend's wedding. ( This friend, some of you may remember, was the one at my wedding who put the hair extensions on his face so he had a ZZ Top beard...) It was a lot of traveling in just a few days for the whole family, but we had a really great time and enjoyed the beautiful coast of Oregon. Chloe, once again, traveled great. Slept on the plane, well behaved, didn't eat great, but that isn't unusual. She is babbling now like crazy. The therapists and I have waited for the repeat of consonant-vowel over and over and she has got the ba-ba-ba-ba down! When we returned to Florida, Chloe had a few episodes of unconsolable crying. Not any where near her normal behavior. One in which she woke up in the middle of the night and it took Evan and I over an hour to get her calmed down, just not Chloe. Then the next evening she woke up from a nap and just started screaming. This lasted for about two hours. Evan and I both felt a bit silly rushing her while she was so upset. We knew something was wrong, but without a fever, do we walk into the ER and say, "Uh my baby is crying, is there some medicine to help with this?" We finally took her temp and she had a low grade fever.  I felt like it wasn't worth messing around,  let's get her to a hospital asap. I had flash backs of the last rush to the hospital, and  that didn't turn out so well.  I still have guilt of not getting her to the hospital soon enough. It's hard making that decision to go get medical help if things aren't obvious. In Chloe's case it is probably best to error on the side of caution and let the doctors take a look. It turned out to be the best thing and turns out they can help for all that crying. Tests and x-rays confirmed the diagnosis of pneumonia. Ug! Talk about a punch in the gut! I swear I should be wearing a sign on my forehead saying, "I let my kid get pneumonia. I suck as a Mom." Of course I think she got sick in the first place from family. Then the tests, all the tests, how much does this little one have to go through?? We got the doctor asking, "14 ounces when she was born? Not, 2 pounds 14, not 1 pound and 14 ounces? This is the smallest birth weight baby I have worked on." Once again, reality check, my baby survived being born at 14 ounces. I guess that is a big deal. So, the little one is on antibiotics and they have helped tremendously already. She is doing a lot better today, and hopefully we caught it soon enough that all will be well. Poor girl! She is handling it all really well. The biggest freak out was the x-ray. She even had a delayed reaction to the shot in her butt. She is a little toughie. But no one wants to hang out in a children's hospital too long. Evan and I both left traumatized looking at all the injuries and kids with puke all over themselves. Quite an interesting experience. They even have TV's in all the diagnosis rooms. Evan and I were forced to watch hours of Disney television before we figured out how to change the channel. It was like hanging out with my nephew Frankie on a Friday night. I guess we will see how this will affect the little one's lungs...

A room of one's own...

Hello everyone and welcome to our little blog! It was difficult for me to set this all up- but I did it and I feel accomplished! I had started a blog years ago and it faded into the nothingness. We will see how this one goes. It is difficult to pick a name for a blog- but, again, mission accomplished. Explaining "14 and up!" goes like this: I was thinking, "Wow, the number 14 has turned out to be a meaningful number to me now. If I wanted a tattoo, I finally have something meaningful to tatoo myself with... do I argue with my mom about getting a tattoo or should I just put the number in the title of my blog?" Well you see what won out. No one likes to argue with their mother. Evan and I became hubby and wife of the 14th of April 2007. We had Chloe on the 14th of September 2010, she weighed 14 ounces. The number just keeps hanging around the family. Which brings me to the reason for this blog. I enjoyed keeping everyone up to date on Chloe on Caring Bridge. She is still an adventure, but I thought maybe the day of needing Caring Bridge has passed. Blogs seem a little more cherry and happy than the wonderful, needed Caring Bridge. Here we go, getting married, having a baby and startin' life out at 14 ounces! Let's see how this goes! The theme of this post is- "a room of one's one". While I do appreciate Virginia Woolf, Chloe's room is maybe, not so serious, but alas she does have a room of her own... as long as there are not any guests at the house, in which case she will be happy to share. But it does represent the three of us finally moving out of the bedroom at my parents in which I grew up! (Loved it, but time to move on!) Represents us being in our new place, back home and the start of the family. There are things, preemie things, still going on with Chloe, but I felt this intro post should focus on the light hearted, positive move we have made. See below, the lil one's room. The mosquito net over the crib is not decoration, it is a neccesity. Motherly guilt over the more than 20 bites on my daughter once we got back sealed the deal.