Monday, December 29, 2008
Christmas!
Coming Soon!
Christmas Pictures and a real update
(make sure you imagine that in the movie guys voice when you read it)
Friday, December 19, 2008
Winter Wonderland
Kennedy's first snow was on Monday it was one of those really great storms where we got a whopping 6 inches and caused us to cancel the teacher coming to work with Kennedy since no one really drives in the snow out here. I was very concerned because Tuesday Kennedy had an appointment down the hill that took me three months to get and I wasn't about to go down the hill and get stuck and run out of oxygen if they shut the pass. Turned out Tuesday was fine and although there was a tiny bit of snow on the side of the road once I got down the dirt road and on to pavement there was no problem. Wednesday morning we woke at 5am to feed Kennedy and for Shawn to get ready for work. Again there was snow on the ground, but it looked like it did Monday so no big deal. Right before Shawn left for work we got a phone call saying the school was closed and Shawn got his first snow day in 3 1/2 years of working for the school district. He was super excited of course. We had gone to bed early the night before so we decided to stay up and watch the snow for a while. Around 8 or 9 Shawn decided he would go into town. It hadn't stopped snowing, but usually by the afternoon snow is all but gone, so neither of us thought much of it and we had a check that needed to go in the bank and we were low on groceries so off he went. Shawn made it most of the way down the dirt road only to get stuck in the snow and mud just yards from the pavement. A stranger stopped and helped get him out and Shawn went about his business in town. I called him periodically with updates and just to check his progress. It snowed the whole time he was gone. On the way home the truck got stuck again so I called next door and my parents went about getting stuff together to go get Shawn unstuck but their big trucks were sliding all over the place so they couldn't help. Shawn had to trudge through at least a foot of snow for a quarter mile with three bags of groceries and two gallons of milk. It continued to snow, and snow and snow all day. In fact it snowed from when we woke at 5 am to at least eight or nine at night. All in all we ended up getting at least two feet of snow. More than I have ever seen. So much so that the cancelled school yesterday and today too. We are still covered in snow and I have no idea how long its going to take to melt. The truck it still stuck but I am hoping that we will be able to get out sometime this weekend so the Kennedy and I can make it to her appointment on Monday for her Synigis shot.
Later In the Day
The Morning After

Monday, December 8, 2008
Gather 'round folks!
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She has been doing so well with sitting up lately! She was sitting in her bumbo today and it took her a whole 15 minutes before she started to get tired. It might not seem like very long, but up till now she has only spent 5 minutes at most in there before she would start having a hard time breathing and we would have to take her out. She did so well that I put her on the counter and she watched me wash her bottles. She has been eating better that past few days. For about two weeks she was having problems with her bowel movements and the longer it took her to have one the less she would eat. We were giving her suppositories, but if you aren't careful babies can develop a dependence on them so I spoke to Kennedy's Pediatrician and she recommended giving her 1-2 ounces of apple juice a day to see if that would help and so far it has worked great. She is not too fond of the apple juice on its own, but we have been mixing 1 ounce of diluted apple juice with 1 ounce of formula and giving that to her daily. We call it her apple milk and she seems to be ok with the 1:1 ratio. I can't believe that Kennedy is going to be 7 month old on Thursday. Pretty soon we are going to need to start her on solids so I am going to talk with the nutritionist at the BPD clinic on Thursday about it and see if we will have to supplement her calories once she moves on to solids. She hasn't been gaining weight as well as she once was, but I think that has a lot to do with some side effects she had from trying to discontinue medications as well as the constipation causing her not to eat.
This past Wednesday I started to feel run down in the afternoon and by Thursday morning I was miserably sick. Shawn stayed home from work to care for Kennedy and Friday my mom took her while Shawn was working. Once Shawn was home it was his full responsibility to care for Kennedy so that she would be exposed to me as little as possible. I wore a mask and washed and sanitized a bunch, but today Shawn said he wasn't feeling well before he left for work. I am much better, so this time I will be able to care for Kennedy if he is sick. Now we have to watch and wait to see if Kennedy will get what we have and hope that it isn't RSV. I will keep the blog updated and let you know if she comes down with something.
Wednesday, December 3, 2008
I know, I know, I know....


Friday we just layed around and relaxed for the most part. Shawn got up and went to Staples to get a couple of pairs of Skull Candy earphones since they were on sale and he goes through them like underwear. It was his first experience with Black Friday and he couldn't believe that there would be so many people waiting in a line at Staples of all places but he was able to get in and out in a matter of minutes. That was and will be the extent of our Christmas shopping this year. We are having a bit of a hard time with money so we have decided there will be no presents this year although we will probably be getting one gift from Santa for Kennedy. I know she won't remember it, but its her first Christmas and I will do everything in my power to make sure Santa stops at our house every year for her. Christmas has so many special memories for me and want her to love the holiday as much as I do. Part of me is glad we aren't buying anything this year. No crowds, no stressing out over what to get for everyone and trying to out do my gifts from last year. It's going to be a nice holiday focused on family and spending time together, but of course the spoiled two-year-old in me wants presents and lots of them. Friday afternoon/evening my mom came over and put up one of her fake Christmas trees up for me. Wouldn't you know it, when you actually take your time and really fluff those branches out those fake trees can look pretty good! My dad also came over and brought one of his extra computers and a laser printer for me. I am trying to apply for some work from home jobs and our old computer doesn't have the memory and storage space needed so he generously donated one of his to the cause. He and Shawn hooked it all up and networked it to our old computer so I can access the pictures and things. We used my 'Alice in wonderland' (ie- super tiny) Ikea dinner table as a desk and its a pretty sweet set-up. It's nice to have a little work space all set up. I made it as much like my desk at my old job was and now when I am sitting at it I actually feel really productive.
Here is where I will be writng my blogs from.

"Ok," you say, "that sounds fun, but super exciting? I don't think so."
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Tuesday, November 25, 2008
She Speaketh, We Shall Listen!
Wednesday, November 19, 2008
The road less traveled
Kennedy has been doing better. Much less coughing with the breathing treatments and we are even starting to wean her down on the frequency. She has regressed a little on her eating and was down by about two ounces a day as of last week, but today she has done well so hopefully she will be back up to her previous level of formula intake. Her weight gain has slowed a bit, but I think that has a lot to do with eating less and all the throwing up she did when we attempted to take her off the erythromycin. She has been talking up a storm the last couple days and has been working hard at strengthening her neck and tummy muscles. She is only taking three naps a day and they seem to be getting shorter and shorter. Overall she is doing really well.
Saturday my parents offered to watch Kennedy for a few hours so Shawn and I could have a break and some time together just the two of us. We thought it would be a great opportunity to use the balance on a movie gift card we received during Kennedy’s NICU stay. We decided on an early dinner at Wing Stop. It was Shawn’s first time and my second. I had been craving Wing Stop since Jenn introduced me to a few weeks before. Well we walk up to the door and sitting inside is another NICU mom. She doesn’t live in the desert so she was the last person we expected to run into. She had twins exactly one month before Kennedy was born. One of them passed early on, but the surviving twin had quite a go of it in the hospital. Any time we would see her in the NICU we would ask about the others child and whatever the latest problem with Kennedy was her daughter had already been through it. The last time we saw her was a week or so before Kennedy was released. They were finally releasing her daughter after 5 months in the NICU and she was running around getting all the things done that you have to do before they will hand over your kid. Of course she asked how we were and how Kennedy was doing. I gave her the reader’s digest version of what was going on with Kennedy and asked about her girl. It was awful news. Her daughter had passed away on Tuesday form respiratory failure. I didn’t ask any more questions. We just offered our condolences and sat down to wait for our dinner. I tried my best to keep it together but I couldn’t. I sat in Wing Stop and cried. Five months of diving back and forth to the NICU waiting to finally get to take your baby home all the while thinking you should be taking two babies home and two months after bringing her home to have her pass away. It hurt so much because we knew her struggle, but it hurt even more to know that at any moment things could turn and we could be in the same situation. I keep a journal for Kennedy. I started it the day I found out I was pregnant and wrote about all kinds of trivial things. Foods that made me sick, every doctor appointment that we had, the ER scare at 17 weeks, its all in there. Then when she was born the journal became even more important to me. I wrote about her weight gains, and the day to day stuff that went on in the NICU. Every once in a while I go back and read the old entries. That first entry with all the excitement and hope and joy that came with watching those two little pink lines show up is killer. It is so hard to look back. Of course it is what every person should feel when they find out they are pregnant, but some how I just look back and think how naïve I was. Part of me wishes I could go back to that. When Kennedy came home without oxygen we were so happy. It was easy to push the NICU to the back of our minds and just concentrate on our baby girl. You want to forget the hard times. Shawn and I talked about how you almost forget you have a sick kid. To look at Kennedy without her cannula you would think she is a normal healthy baby. It was kind of a reality check when she had to go back on oxygen. We almost had to remind ourselves that we have a sick baby. I suppose if I went around thinking about her health problems all the time it would drive me crazy. Its like this- when you leave the NICU you think you’re done. You fought hard and you made it through and you won, but what you don’t realize is that the NICU is just one battle and that the whole war is still ahead of you. The path Shawn and I travel is a difficult one. It’s certainly not one that most people would choose, but it is the path given to us and I feel we will be a closer family because of it.
So dear readers, before I go I would like to ask you a favor. When you get home today and find you kid has colored all over the walls, or your teenager is being a teenager before you get mad or ask your self why, take a minute to hug them and tell them how much they mean to you and if you don’t have a kid then tell you partner or your parents or even your cat because you never know what life is going to hand you next.






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