Winter Wonderland

As I may or may not have made clear in past blog posts we live in what is referred to as the High Desert of Southern California. For all intents and purposes it is in fact a real-life desert. We live in a semi-rural area on dirt roads, we have coyotes and rattle snakes and road runners (meep, meep), it's hot as heck in the summer and we are one of the few places in the world where the Yucca brevifolia grows. Being that desert is prefaced by "HIGH" in our area it means that we are closer to the mountains and occasionally we get some snow. By some I mean and inch or two once or twice a year. Fun to watch, but certainly nothing to write home about. When we are really lucky and have a particularly bad storm move through we will get 6 inches or even a foot on rare occasions, so although "Winter Wonderland" may be a popular blog title this time of year it really doesn't have any business on this blog; that is until now.
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.

Kennedy's appointment was to go over an MRI she had back on August 29th and the doctor said it look perfectly normal for someone that gestational age. She has been talking up a storm and laughed for the first time last Saturday. She is sill sneezing and coughing a bit but other than that doesn't show any signs of being sick.

8-9 am

Later In the Day

The Morning After

Gather 'round folks!

Here it is! The very first picture taken by me of an in focus, front facing, smiling Kennedy.

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.

I know, I know, I know....

I know I'm slackin' in the blog department, so here comes your super exciting holiday weekend update. Well it was super exciting for us, I'm not promising reading it will be super exciting but it should at least be mildly entertaining.

So last Thursday was Thanksgiving. We had a pretty quiet thanksgiving. Shawn and I had been discussing how we were going to be handling the holidays a while ago. Usually we go to my mom's house and there is a good amount of people who show up. The last thing we want to do is mess up anyone else's holiday plans or make them feel afraid to come because of Kennedy so we decided that one of us would stay home with Kennedy while the other went to mom's and we would switch off so both of us could have holiday fun. For those not in the know we live right next door to my parents so it isn't a big inconvenience for us just a quick walk to the neighbors. Well turns out the only people who showed for Thanksgiving this year was us and my sister's boyfriend who was on his way to a job in Oregon. It was a nice day. I made the turkey and mashed potatoes and my mom did the rest. It was a great day wit the family and I got a little break from taking care of Kennedy while my mom and dad got to fawn over her. I didn't really take any pictures except these two.

Take this Martha Stewart!

Pretty in Pink
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."

Well the SUPER exciting part happened on Sunday. Amy from Elmwood Court Photography has been following Kennedy's blog for a while and when Shanw and I went to Dave and Jenn's wedding back in October she was one of the photographers. She spotted my from acrass the lawn and said "Hey! I know you! You're kennedy's Mom!" Well I thought the paparzzi had finally recognized me for the celebrity that I truely am, but alas she wanted Kennedy not me. lol. She said she was a reader of the blog and offered to do a complamerty photo shoot with Kennedy. Well it was a dream come true for us since Shawn and I really wanted some professional photos of Kennedy, but there is no way we could have taken her to the mall to get them done and no way we could afford to have someone come to us to do them. We emailed back and forth a bit and decided Sunday would be a good day so she drove all the way up to our house to do the shoot. Jenn tagged along with Amy for some pointers and tips and to learn so she can get even better at taking pics then she already is. They spent about four hours taking pics of Kennedy and even a few of us as a family. Amy would show me some of the pics on her camera as she was taking them and I was really exctied to see them all. Yesterday she put a sneek peek up on her blog and they came out awesome! She was so good with Kennedy and so patient in dealling with all of here medical equiptment. Dad insited that Kennedy would want pictures of herslef without the canula on so we took it off for some of the pictures and did blow-by oxygen in between each picture and Amy was great about it. I can't wait to see the rest of the pictures! So if you are in need of a great photographer go to Elmwood Court and set up an appointment!

Here are some pics of the photo shoot in progress

She Speaketh, We Shall Listen!

This is Dad checking in for a quick post. Sorry for the bad lighting (Seinfeld) but it's the audio that's important here. Enjoy.

The road less traveled

So much to say, so little time. I will do my best to get this all out before Kennedy wakes from her nap.

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.

Kennedy's Wish List

Since Christmas is coming up and Kennedy's 1st birthday party is increasingly occupying my mind I have added a link under the welcome note to Kennedy's Amazon.com wish list. Right this second there isn't much on it, but I plan on review the list of developmental toys that Early Intervention has provided to me and add some to the list as well as some books and other things we need for Kennedy. Hopefully this will make it easier for friends and family who wish to get Kennedy a gift, but are unsure of what we need or what she is developmentally capable of using. I will review and update the list often.

Things I like about being a mom to a mircro-preemie

Being a mom to a micro-preemie hard. It’s challenging, and stressful and overwhelming at times. I have been lucky enough to find a great online support group at Preemie Blog Moms. It’s a place where I can go to chat with other parents who face the unique challenges of raising a micro-preemie. All to often it becomes a place for us to vent about our frustrations so I thought why not turn things around and make a list of things we like about being a micro-preemie mom. I am inviting fellow micro-preemie moms to add their favorite things about being a micro-preemie mom to the list by posting a comment. Then when we are having one of those bad days when you can’t see past the medications and doctors, and developmental delays we can check out the list and maybe it will help us feel just a little better.

Here are some of the things I like about being a micro-preemie mom:

1. While we were in the NICU Shawn and I got to do a lot of Kennedy’s cares. Since she was in there for 137 days it gave us plenty of time to learn how to take care of her and what was normal and what was not. Before Kennedy was born I honestly can’t remember ever changing a diaper. Not one in my entire 27 years on this planet. I like that I had doctors and nurses to give me hands on instruction on how to care for my baby including a hands on CPR class. If I had a full term baby I wouldn’t have know ¼ of the stuff I know now. I think I would have been more stressed out about taking Kennedy home if she was full term then I was taking her home from the NICU. Plus I can swaddle a baby like no body’s business.

2. Apena Monitors- Ok I know I shouldn’t be monitor reliant, but it is nice to have your baby hooked up to a monitor that will alert you if she stops breathing. One less thing to have to loose sleep over as a new parent.

3. Gratitude and Perspective- Being in the NICU day in and day out you see a lot of stuff. It’s different then reading about it or watching it on TV. You see joy and hope and fear and unimaginable grief, and not only do you see it, but you live it. There are constant reminders that even though your situation is horrible it could be so much worse than it is. It makes you grateful for everything. Every breath your child takes, and every drop of milk they eat. Every day that you get to spend with your child is a gift that so easily could have been taken away. It’s easy when you haven’t had to face such a hardship to look at other people’s stories and say “Oh, that is so tragic, so sad. What a strong family.” When you haven’t experienced it its just another sad story that couldn’t possibley happen to me, and there is nothing wrong with that. I did the same thing before Kennedy, but shortly after her birth both Shawn and I noticed that we looked at people differently. We no longer looked at a child who was bald and hooked to Ivs and thought poor sick kid has cancer. We started looking past the bald head, and the Ivs and just saw a kid. I can look at a baby with a tube up their nose and not even notice. I am so grateful to be able to see past medical equipment, and a diagnosis and actually see the person and have an idea of the struggle they are going through.

4. Relationships- I had no idea how many people love and care for us until Kennedy was born. When you go through such a tough situation it really brings people together. Family, friends, and even perfect strangers came together to help us. It was amazing and still is. I can’t tell you how many times I cried tears of joy when somebody stepped forward and helped us or even just sent a card to let us know they were thinking about us. Also Shawn and I have grown so much together through this experience. Stressful situations can take a tiny crack in a relationship and turn it into the Grand Canyon, but the relationship between Shawn and I has gotten so much stronger. We can face anything together and all those huge issues that most couples face seem like peanuts compared to what we have been through together.

5. Germs- No I don’t like germs, but I do like that I can be as neurotic as I want about germs and hand washing and no one can bat an eyelash at me for it. Every new moms dream.

6. Bravery in the face of medical procedures- I understand most new moms freak out a little when they have to watch their babies get shots. Who can blame them? It sucks to watch your little one get hurt and it sucks even more when you have to hold them down so that someone can poke a needle in them. Listening to a little body be racked by a cough is pretty awful too, but Kennedy had been through so much worse and done fine with it all and even though I don’t like watching her get shots or have her heel milked for 10 minutes for a blood sample its nothing compared to what I have seen done to her. If I can stand to see her tiny body paralyzed and hooked to a vent, then a set of vaccines is a cinch to watch.

7. The best part of being mom to my mircro-preemie- Kennedy. Shawn and I sometimes wonder if she would be different if she were full term. Would she look the same? Would she have the same personality? What ever the answer is I don’t care. I think being a micro-preemie is part of what makes Kennedy the person that she is today and I love who that person is. I wouldn’t change it for the world.