Christmas!

Well here it is the official Christmas update for Miss Kennedy. It was a great first Christmas. Shawn and I have a tradition of opening one gift on Christmas eve so last Wednesday Kennedy got her first Christmas gift. I was really excited to give her one of her toys in particular, so instead of waiting until night time we went ahead and gave it to her in the morning. It was a Loop-a-palooza and she LOVES it! She has been playing with it every day since we gave it to her. Christmas morning Kennedy slept till 9, which is really rare for her, so Shawn and I just hung out and waited for her to wake up. We gave her a bath and go her dressed and then we got to give her her gifts. She seemed to like the gifts. She looked at each one carefully and touched them and pretty much gave them her full attention. Santa brought her a ring stacking toy and a elmo/cookie monster ball that shakes and talks when you press it. Kennedy also got a gift in the mail from some friends. It was her very first package addressed to her and everything! We opened that one after the Santa gifts. It was wrapped and Kennedy liked helping with the paper. It was a busy ball bopper from her amazon list. After we did the gifts at our house we went next door to Grandma and Grandpa’s house. Boy did Kennedy score there! She got a high chair, and some spoons and a little net thing that you put food in and the baby can suck on it without choking. She also got a ton of clothes! We set up her high chair and she sat at the table with us during dinner for the first time ever. Here are some pictures from the day.

Kennedy with her gift on Christmas Eve

Coming Soon!

Coming soon to a blog near you:

Christmas Pictures and a real update

(make sure you imagine that in the movie guys voice when you read it)

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.

A trip to the doctor...again

Kennedy's cough has gotten progressively worse over the past two days so this morning I called the pediatrician and made an appointment for this afternoon. Her sats were down again and the doctor thinks that its because of her BPD. We upped her oxygen to 1/4 lpm and we are going to put her back on Diuril. The doctor also ordered two breathing treatments- albuterol and pulmicort to be delivered by nebulizer. At the doctors office she did well with the albuterol by she started coughing so bad she trew up while we were doing the pulmicort treatment. We are going to try it again tomorrow and see how she does with it, but if she has the same reaction then we are going to discontinue the pulmicort. The nebulizer is being delivered tonight so we can start treatments right away and the diuril will be ready tomorrow. Stay tuned and I will update the blog and let you all know how she is doing an a few days.

National Prematurity Awareness Day

Each day in the U.S. more than 1,400 babies will be born prematurely. November is National Prematurity Awareness Month and November 12 is national Prematurity Awareness day. Celebrate the day by signing the March of Dimes Petition for Preemies here and visiting the March of Dimes website to learn more about premature birth. Help spread the news about premature birth by passing on this blog post to your friends so they can read the on going story of my favorite preemie, Kennedy.

Oy Vey! What a weekend, what a relief.

First thing first- Happy six month birthday Kennedy!!!!!


So last week Kennedy had alot of changes. We attempted to drop 3 meds, she got put back on oxygen and we had appointments 4 out of 5 days. Friday started off with quite a bit of excitement. Kennedy threw up 3 times in as many hours and resulted in two baths for her and several wardrobe changes for both of us. At our GI appointment on Monday the doctor said to start Kennedy back on the erythromycin if she started to spit up a lot. I thought we were in the clear since she had done fine all week, but after the morning vomit-fest I went ahead and started her back up again. She was also very snotty and had started to cough a bit. It was a little concerning to me since we had been out and about so much that week so I decided to keep a close eye on her. During the day her temp was reading pretty low so that night I ended up calling the pediatrician when it hit 95.7. She said to bundle her up and recheck in a few hours and if it was still low to go to the ER. At 2am she was still reading low so we packed her up and took her to an all night urgent care in the hopes that we wouldn't have to pay the $50 for the ER visit. I ran in and explained the situation and they pretty much told me that they didn't want anything to do with her given her medical situation (extremely low birth weight, on O2 plus tons of meds) They said take her to the ER. She was smiling, happy and active and other than the snotty nose and the cough seemed ok so Shawn and I decided to take her temp one more time before dragging her into an ER filled with who knows what kind of germs. Up to this point I have always taken her temp under her arm. It's how they did it in the NICU and its always worked fine so I figure why fix what isn't broke. This time I broke down and did a rectal temp and what da ya know?! Perfect temp. So from now on I will be taking her temp the good old fashioned way. Her cough and snotty nose continued through out the weekend as did the vomiting on a much smaller scale, so Shawn and I kept a pretty close eye on her. We knew that all of the symptoms could be caused by the recent med changes and O2 but they could also be signs she was getting sick so we were a little worried. Today was a scheduled doctors appointment so we were very relived to find out that Yes the snotty nose is probably from the oxygen and that we should start using the humidifier 24 hours a day, and the cough is something normal that baby's start to do around 3 months (Kennedy's adjusted age) and we were lucky enough that she did it at the doctors office and the doctor said it was a normal cough. While we were at the doctors they checked her sats and they were at 92 so we had to go up on her oxygen flow from 1/16 lpm to 1/8 lpm. Kennedy also got four shots today so tonight and tomorrow should be fun.

Two steps forward one step back

Two steps forward one step back. I heard this term more times than I care to remember in the NICU. I hate it. I hate the sound of it and I hate what it stands for. Today was kinda a two steps forward and one step back kinda day.
I wasn't feeling well this morning. I have been feeling really crappy lately in general. Usually I feel ok at the start of the day but at the end I feel completely exhausted. I think this week has been worse because it has been one of those weeks where we have had appointments every day and I just can't get a minute to slow down and take time for myself. Today I felt exceptionally bad. So bad that I woke Shawn up and asked if he could call in because I didn't think I could drive down the hill and back by myself and we had an appointment that Kennedy had to go to. It was a High Risk Clinic appointment. We meet with a whole team of people for Kennedy. I was really hoping the Nutritionist would reduce the calorie mix on Kennedy's formula but she said she still wants to keep it at 30 calories for now even though she is doing really well. I took in the results of some blood work that was done on the 30th and they decided to stop Kennedy's Diriul and Mag Chloride. That was a huge victory for us- consider it the two steps forward. Not only does Kennedy have way less meds to take, but now none of them need to be refrigerated which makes traveling with her soooo much easier AND we don't have to refill the Mag again which is great because its not covered by insurance and costs around $50.
So whats the step back you ask? Kennedy is back on oxygen. When they did her pulse-ox read she was only satting 92 (out of 100). 92 is not horrible, but its not great either and they are concerned that she is satting even lower in the higher elevation where we live and even lower while she is sleeping. As a precaution they are having us keep her on 1/16 lpm and they will recheck her in a month when we go back. I'm not gonna lie. It upset me. No being on oxygen is not the worst thing in the world, especially compared to what we have been through. Even though it is a really low flow rate I still cried a little and felt upset. I was so proud that she didn't have to be on oxygen when she came home. Its just a little disappointing to me. Oh well. I know it could be A LOT worse so I guess I will declare this the official end to my pity party about oxygen.

A trip to GI, a call from the doctor and a prayer request

Kennedy had a GI appointment today. They did the usual doctor visit stuff; weight, length, head circumference, listen to her heart, feel her belly -all that junk. They asked me how much she eats and how many wet and poopy diapers a day. They said she didn't look jaundice and to have our pediatrician send a copy of the blood work to their office. He said we can try taking Kennedy off the Erythromyicin since it is such a tiny dose anyway, but if she starts spitting up we need to put her back on. While we were waiting at the GI office we ran into some friends from the NICU- The Bonomos. They recently got to take their little girl home, but they still don't have a diagnosis. Right now their daughter is being treated for symptoms, but they have no idea what is causing them. She is also having a tough time with feedings lately. We would like to ask all of our religious readers to please pray for their family and their daughter. Click here to read about their journey.

Upon returning home We had a message on our answering machine from our pediatrician. Not the nurse, but the actual doctor. She said she needed to discuss Kennedy's recent blood work. Of course I called immediately but they were out to lunch and the service answered. I was then left to ponder what could possibly be so wrong with Kennedy's blood work that the doctor herself would be calling me. It was 45 minutes until they were supposed to be back in the office. I called exactly at 1:30p and SURPRISE they weren't back yet. So 3 calls and 15 minutes later I finally got through. I spoke with the nurse, but she couldn't help me. She said I had to call back in 5 minutes when the doctor gets in. Ok now I know its serious. I want to throw up. What the H-E- double hocky sticks could be wrong. Wait- I thought they arent supposed to give bad news over the phone. Maybe its so horrible that they cant wait for me to come in. Dear God don't these people know how long 5 minutes is! Finally I get through to the doctor. Her phosperus levels are too high so she wants me to adjust one of her meds. Thats it. No biggie just cut back on the Phos-NaK to 5ml instead 7.5ml. Her liver enzymes are a little off, but her billi looks good and so does everything else. I thought the phone call stress was supposed to end once we got her home. I guess not.

10 pounds 2 1/2 ounces- WOW!

A big girl has a busy week

Ok first and foremost- Kennedy is HUGE! I weighed her on Wednesday (3 days after her 9lb 4ounce weigh in) and she was 9 lbs 10 ounces. I swear by now she is a good 10 pounds. I would like to thank Johelen for this post about how her sister bought her a baby scale. Soon as my mom read it she went out and got me one and it has been so nice to have now that the doctor's visits are getting further and further apart. I can't tell you how weird it is going from knowing your baby's weight on a daily basis to having to only get it read every few weeks at the doctors.

Kennedy had a pretty big week this week. Monday morning Kennedy had an eye appointment. They are looking very good and we have a follow up appointment in a month. After that it should be four months and then every year unless we start to notice she is having problems. After the eye appointment we went to the airport to pick up my sister and had our car selected for a random search. That was fun but the airport police took mercy on us took one look at the trunk and thankfully didn't make my unpack Kennedy or the rest of the crap that she is required to travel with.

My sister Christi flew in from Arizona for a few days to help me clean and organize my office which had become a dumping ground for all things paperwork related since Kennedy was born. While she was here she also cleaned the freezer. It was pretty nasty since I hadn't been able to look at it since the breast milk incident. We thought it might work so we plugged it in, but after a few hours it died again. I think its for the best though. We are going to get rid of it and I won't have to remember that horrible night I lost all my beast milk every time I see it. I do miss having an extra freezer though. Christi left on Wednesday and it was a pretty quiet rest of the week.

Shawn's dad (Dan) came out on Friday to visit with us and Shawn's brother's family. Dan stayed with us last night and went home this morning. We got scolded for not sending pictures. Both he and my mom have had to hijack pics from the blog to put on their computers so I guess I better start e-mailing out pictures.

Kennedy has done amazing things in the two weeks since the Early Start people were out doing their assessment. She has hold on to a plastic link for a minute or two and has really become more vocal and more alert. She is spending more time awake during the day too. Some other huge news- we retired the four ounce bottles!!! We are now offering her between 120 ccs and 130ccs a feeding she generally takes around 100 and a little less at night but she has just really jumped up on her feedings the last 3 days. Also we switched to a level two Dr. Brown nipple and she seems to be doing really well with that. Hopefully the nutritionist will see fit to allow us to mix her formula for fewer calories per ounce when we go on Thursday.

Kennedy had a good first Halloween. I didn't get her a pumpkin or costume like I had wanted, but life kinda got in the way again. We did get her dressed us in a hat and sleeper and took her next door to Grandma and Grandpas to trick-or-treat. She got quite a stash since she was their only trick-or-treater.

It's a little blurry but its the closest I have come to getting a full smile on camera.

Kennedy with her loot

Grandma holding Kennedy
Grandpa Dan and Kennedy

Look at her grow!

Remember this picture?

It was taken when Kennedy was 3 weeks old (2pounds 7ounces)

Well look at her now!

1 month home

Today is the 26th which means that Kennedy has been home for 1 month now. She has done so well since coming home. Everyday she is more alert and active and talkative. Her feeding is much improved as well. This week she just seemed to really jump up on her feedings. Last week her average intake was 467ccs (15.6oz) . So far this week it is around 556ccs (18.5 oz). This infant feeding chart from UC Davis says that on average a 2-3 month old will take between 25 and 36 ounces of formula a day. So even though its not near the full feeding for a 'normal' infant it is a huge step in the right direction and hopefully she will continue to do well and we can start weaning her calories in her formula down to a normal level. Right now her formula is mixed for 30 cals/ounce. Normal baby formula is 20 cals/ ounce. When she was discharged She weighed 7 pounds 12 ounces and now she weighs 9 pounds 4ounces. Shawn and I are both so pleased with her progress and we can't wait to see what month number 2 will bring. :0)

A great week!

We have had a great week since I last posted!



Last Tuesday a broken seat belt forced us to buy a new car. It was something we had wanted to do, but were waiting for better timing. Well life decided the timing for us. At the beginning of September we finally paid off Shawn's Camry. The plan was that I would take the Camry for the baby and we would sell the Hyundai and use our tax return in January to put down on a new car for Shawn. Well me made that finally payment and of course something goes wrong with the Camry. It was a transmission problem and we just didn't have the money and weren't sure if we even wanted to put money into the car. So while we waited and decided what to do we put the car seat in the Hyundai and used that as the family car. It was quite comical trying to fit all three of us in the Hyundai Accent. The car seat was so big that the front passenger seat had to go all the way forward and Shawn had to drive while I tried to squeeze in the back seat that doesn't even have enough leg room for a four year old. I took the car seat out for the eye appointment that Jenn took us too and when I tried to put it back in the seat belt was broken. It seems that the guy who installed the car seat for me at the CHP pulled a little too hard on the seat belt and now it wont retract. Since that is the only place in the Hyundai that the car seat will fit we didn't have a car to drive Kennedy to her appointments. So we took the Camry down to CarMax in Ontario. They gave us a great price for it. A thousand dollars more than what we thought we would be lucky to get. We had planned on looking for a car, but not buying one. We were going to use my mom's car for Kennedy's appointments and use our tax return towards the down payment on a car. As fate would have it we found the perfect car for our family. And what does our perfect family car look like?
A 2005 Pontiac G6 GT

Sporty huh? But it actually has 2 more inches of leg room in the back than the Camry. It has a panoramic sunroof big enough to put a TV through, a V6 and all kinds of super neat features. Joe Burk was our salesman and he did an awesome job. Super friendly, no pressure, and able to answer all our questions. We would defiantly go to him again and so should you! If you are in the market for a car check out CarMax in Ontario and ask for Joe Burk.

In other news- We went for our first BPD clinic appointment and Kennedy has been doing so well they started weaning two of her medications. The Magnesium was reduced from 3.5 ml 3xs a day to 2.5ml twice a day and the Diuril was reduced from .7ml 2xs a day to .7ml once a day. We have another appointment next month and I am hoping she will be taken off them all together.

This past weekend I was a little concerned about Kennedy's poop (I bet she is going to hate me for this when she gets older) It had changed consistency quite suddenly and didn't improve over the weekend. She was eating well and seemed to be feeling fine, but still the change was drastic enough that Shawn and I took her to the Dr. on Monday. Turns out that the poop is fine; it was perfectly normal and what she was doing before was not normal. The Dr. attributed it to the fact that she has been eating more lately and has enough going through her to create normal baby poop. While we were at the Dr. office she got her first Synagis shot. That's the vaccine for RSV that she will be getting monthly until the end of RSV season. But the super great news from the visit is her weight. NINE POUNDS!!! I can't believe how huge she is getting! That is a 10 ounce increase from last Monday. She is also 21.25 inches long. What a big girl.

Yesterday we had our assessment from the Early Start program. It is a state funded program that helps with children from birth to age 3 that are at risk for developmental delays. Kennedy did pretty well on most of the assessment and is fairly close to her adjusted age. Her worst two being Gross Motor skills and Expressive language. She was in the 0-1 month range for the gross motor skills and 0-2 months for expressive language. They will be sending out a teacher once a week for an hour to work with her and give us activities to do with her to help her catch up. Hopefully she will do well enough that they can graduate her from the program before she is 3 .

We are still here!

Ok, ok, ok I know I have been slackin in the blog department lately, but I really do have a good reason. Her name is Kennedy. I think you may have met her. I thought life was crazy when Kennedy was in the NICU but she kicked up a notch just like Emeril now that she is home. BAM!
So our eye appointment went great on Thursday. The ROP is regressing so we have another appointment in two weeks and hopefully only monthly after that. The day wasn't stressful at all like I thought it was going to be. My good friend Jenn had the day off and drove us down for the appointment. Thank God for Jenn. I had only gotten two hours of sleep that night and after spending 30 minutes under the water in the shower I still couldn't pull myself together. There was no way I could have made the drive by my self. After the eye appointment Me, Kennedy and Jenn went to the NICU to visit. Gail was there and so was Allyson. We also got to see our two favorite NPs Lisa and Rita. They weren't working the day Kennedy got to go home, so it was nice to thank them in person for everything they did for Kennedy.

Another exciting development this week- My Super Target opened! Ok I know this has nothing to do with Kennedy, but those of you who know me know I LOVE Target. I have been waiting for this store to open for a very long time and now instead of driving 20 miles to go to a tiny, crappy, old Target with the worst driveway in the desert for scraping up the bottom of your car I now only have to drive 10 miles for a huge, beautiful, new Target. It opened Wednesday and I have already been there 4 times. I super puffy heart Target. My only complaint- no Clarence sections yet. Oh well there will be in a month or so I am sure.

Sunday Kennedy got to spend the whole day at Grandma's and Grandpa's doing all sorts of fun stuff. Mommy and Daddy got the day off to attend Jenn's wedding. It was absolutely beautiful. It was on a cliff looking over the ocean and afterward we all went to a great restaurant for the reception. It was just a really nice day. Watching the wedding ceremony and hearing the vows brought back all the feelings I had on my wedding day a little over a year ago. It hasn't been that long, but with everything Shawn and I have been through this past year it was a sweet reminder of how far we have come and how much we have grown as a couple.

Speaking of reflecting back- Saturday Kennedy turned 5 months old. I can't believe it. Although the NICU days seemed to drag on forever now looking back it seems like they past us by in an instant. Kennedy has been home for a little over two weeks, but it feels like she has always been here. I can't remember life without her. She has been doing so well. Last week the Dr was a little displeased to see she had lost some weight, but today she was back up again. 8 pounds 6 ounces. She did so well this week that we don't have to go back for two whole weeks. I'm happy and so is my pocket book. Copays for all these doctor visits and starting to get a little out of hand.

So I really am sorry about not posting sooner. I am still trying to adjust to life with Kennedy and once I do I am sure I will be back to my old posting self. Until then I will try my best to get up at least once a week. Shawn and I are so pleased with the response to this blog and we appreciate all of our followers and everyone who keeps asking when a new post will go up. Thanks to all of you for your support and encouragement! Don't forget to add your self as a follower of the blog so we can see who you all are.

Here are some pics to tide you over until the next post:

Could we get her in any more pink?

Daddy and Kennedy taking a nap

Kennedy watching the Dodgers

D&J getting married at the beach

Me and Shawn at the wedding

Our First Week Home

It's Friday morning which means that Kennedy has been home with us for a week and what a great week it has been. Shawn and I quickly fell into the routine of taking care of a baby. It was only two days before we felt completely comfortable and like she has been with us all along. Kennedy has been such a good baby. I don't think she has spent an hour total since we got home crying. She has been completely content. Tuesday she started cooing up a storm. Grandma and Grandpa bought her a bassinet that can roll around and it has a mobile with bears that she loves. Every time we turn it on she is all smiles. We had appointments every day this week except Thursday and it looks like we are going to have them everyday next week as well. As a matter of fact most of October is booked already and part of November. Thursday we have a follow up eye appointment down the hill that is going to keep us out of the house for at least 6 hours. I am a little anxious about being gone that long and all by my self, but I suppose the best teacher is experience so after that I should be a pro. I will be sure to let you all know how it goes. In the mean time here is a video of Kennedy cooing at her bears:

Happy Trails to you....

So we said good by to the NICU Friday. It was a happy day, but it was a little sad too. Gail- our daytime Primary was working so that was pretty much awesome and Jasmine came in to see Kennedy off and brought her husband Rick and their two kids. So even though we didn't really tell anyone we were going home until we were actually out of the hospital we still had pretty nice group of well wishers. We got to the hospital early and did a few things before we went to the NICU. We had to wait for quite some time because the person who mixes the compounds in the Pharmacy didn't get in till 2:30. By the time all the paperwork was signed and we did our victory lap around the NICU to say good bye it was about 5pm. Kennedy slept on the car ride home. We had her hooked to her monitor and she did well with it. I did put the oxygen on her for the last part of the drive, but I think it was more paranoia on my part. It was evening and the tint on the windows made it hard to tell if her lips were pink enough. Soon as we got out of the car I could see she was fine so I took the oxygen off and she has been ok since. We stopped next door at grandma and grandpa's house before coming home. My Dad got to hold her for the first time and she was smiling and flirting up a storm with him. When we got home we fed her and then just layed around and enjoyed having her home. She did have one episode of vomiting, but after we put her bed on an incline she was doing much better. Shawn and I both got about 6 hours of sleep that night. I took over all the feedings and diaper changes after we went to bed since that is how it will be when Shawn goes back to work.
Yesterday was the first full day home with Kennedy. She met our neighbors from across a fence and some distance between us. She had several trips outside as we were back and forth between our house and grandma's and grandpa's house. She liked her Baby Bejorn front pack and she LOVES her swing. Grandma and Grandpa watched her for about an hour while Shawn and I made a trip to the grocery store and to pick up some videos. I think she may have had a little too much stimulation yesterday. Towards the end of the day she started getting really fussy so we made up her bed just like it was at the hospital and gave her Monkey to look at and put some blanket rolls around her and that seemed to do the trick. Today we plan on taking things a little slower and trying to help her get more quality deep sleep instead of the shorter lighter naps she had yesterday. Oh I almost forgot- when we gave her a bath yesterday we did it in the kitchen and used the spray attachment on the sink to help keep her warm and rinse her off and she loved it!

Here are some pics from Friday and Saturday:

Gail, Allyson, Me, and Stephanie

Gail and Jasmine in the same room together. They are no longer like Superman and Clark Kent!

Kennedy in her going home outfit and magic bonnet from Aunt Christi. Gail said she looks like a little Amish baby.

Kennedy's first time outside

In the Car Seat on the way home

Grandpa's First time holding Kennedy

Kennedy's First bath at home

Kennedy and Monkey playing on the floor

"The Magic Bonnet"

I'm just a little hankie,as square as square can be;

but with a stitch or two,they've made a bonnet out of me.

I'll be worn home from the hospital,or on the christening day;

then I'll be neatly pressed,and carefully packed away.

Now on the wedding day,so I have been told;

every well dressed bride,must have something old.

so what would be more fitting,than to find little old me;

a few stitches snipped and a weddinghankie I'll be.

If by chance it is a boy,some day he'll wed;

so to his bride he can present,

the hankie once worn upon his head.

Kennedy Is Home!!!!!!!!

After 137 days in the NICU we finally got to take our baby home!

Now before you all come knocking on our door dying to meet her I would like to go over a few things. First- just because she is out of the NICU does not mean she is the equivalent of a healthy full term baby. She is a micro preemie and regardless of how old or how big she gets she will always be a micro preemie and have health problems related to it. One of those problems is Bronchopulmonary Dysplasia. Her lungs were not fully developed when she was born and they also were further damaged from being on a ventilator for an extended period of time. What this means is that she is highly sensitive to infection. She cannot be around smoke- even the lingering smell of smoke can hurt her sensitive lungs. We are also bringing her home at the beginning of RSV season. RSV is a common virus that causes cold symptoms in healthy full term infants, children, and adults. Babies who were born prematurely, at an extremely low birth weight, or who have a chronic lung condition are at an extreme risk for catching this virus and it can cause severe complications including being readmitted to the hospital and intubated and back on a ventilator. Because of this risk Kennedy will be given Synagis shots to help prevent infection and must be guarded carefully against sick people. She has to be kept away from crowds for the duration of RSV season. RSV season usually lasts from September/October to April depending on the area. Since we are not anxious to be back in the NICU we are going to be taking the following precautions:

No sick visitors- If your sick or you think you might be coming down with something or someone in your household is sick please stay home.
Masks- If Shawn or I feel your questionable or maybe you just have an allergy drip or a cold sore we may ask you to wear a mask.
Hand washing- No I probably won’t make you do the full three minute NICU scrub, but you will have to do a good scrub up to your elbows before you may touch her. Also we may have you use a hand sanitizer after washing.
Kids- School age children are big on getting colds and being exposed to them so during RSV season we really aren’t letting them touch or hold Kennedy.
Speaking of Holding- Preemies react very differently to stimulation and become over stimulated easily. Shawn and I will help you to know if she needs a break. She won’t be able to handle the passing around a typical newborn gets and we will probably limit the people who are allowed to hold her.

I am posting these guidelines so that everyone will know what to expect when they visit. Please don’t let the info scare you or keep you from visiting and please don’t take any of the precautions personally. We just spent 137 days in the hospital and like I said we are not anxious to go back.

So now that she is home is this the end of the blog? HECK NO! Its just the beginning. So here is something to keep in mind as you continue to follow the blog- Kennedy has two ages. Kennedy was born on May 11th which means her actual age is almost 20 weeks old. Her second age is called her adjusted age. It is how old she would be if she had been born on her due date. Her adjusted age is 10 weeks old. Her adjusted age is used when looking at developmental milestones. Kennedy will always be behind other kids born the same time as her. She will always be a little smaller and more petite but as she gets older (5 or 6 years and up) the differences will become less noticeable. Even though she is actually a little over four months old her development is closer to that of a two month old. It might take her a litter longer than average to rollover, crawl, eat and walk but she will catch up in her own time.

What’s will Kennedy’s life be like now that she is home? Well she still on most of the same medications she was on in the hospital. 8 to be exact. She also came home with oxygen since we are at a higher elevation than the hospital. They sent her home with the oxygen, but not on it. Shawn and I will be monitoring her breathing and deciding if she needs to go back on the oxygen for a while while she adjusts to the higher altitude. She will be followed closely by the High Risk clinic, BPD clinic, the eye clinic and the Gastroenterologists at the hospital as well as her local pediatrician. So other than her doctor’s appointments she will be on lockdown for the duration of the RSV season.

Eye Surgery Update

Just a quick update- Kennedy's eye surgery went well. It took two doses of Morphine and 1 1/2 doses of versed to sedate her, but she didn't have to be re-intubated. They did put her cannula back on as a precaution, but she was back off oxygen this afternoon and she even nippled all her feedings despite being ridiculously tired from the sedation. All is well and we are one more step closer to home. Check back soon to see if we get assigned a discharge date.

I <3 Primaries

I love our primaries! I have been wanting to blog about my primaries for a while now but life has been so busy I just haven't had a chance yet so here I go! For those who don't know a Primary Nurse is a nurse who signs up for your baby so that whenever they work they get your kid. At least that was how the program was described to us when we were admitted to the hospital and waiting for Kennedy to be born. It was almost an after thought that that followed the lengthy and scary description of what life in the NICU would be like for Kennedy. What they didn't say, but any NICU mom will be sure to tell you is that Primaries are angels. Guardian angels if you will. Sure they get your kid every time they work and the premise of the primary nurse program is so that the child and parents will have some continuity during their NICU stay. They are supposed to get to know your kid and provide a familiar face for you, but they do SOOOOOO much more than that. They care for your child 36 hours a week. They know what she likes and dislikes. They hold her and comfort her when you're not around. They know her favorite sleeping position, and how she reacts to certain meds. They know your child- how to comfort, how to heal, and how to make her happy. They go through the ups and the downs with you. When your stuck in this strange scary NICU world they are one of the few people who can relate to what your going through. They are a shoulder to cry on, and a cheerleader, and a friend. They grow to love your child and are more like an Aunt with extensive medical knowledge to your child than a nurse. Without them I would have been lost.

So here is a tribute to our Primary Nurses:

Meet our daytime Primary, Gail:

She has been there from the very beginning. She was the first nurse to sign up to primary Kennedy. We liked her right away and asked if she would, but she had already decided to sign her self up. See that adorable purple dress and socks Kennedy is wearing? Those are a gift from her. Gail loves her horse Amadeus (short for Rock Me Amadeus, his show name), her new motorcycle, and sudoku. Gail has been Kennedy's biggest advocate. Without her on Kennedy's side I don't think we would be as far as we have come today.

Meet our night Primary, Jasmine: Jasmine signed up for Kennedy about 1 or 2 weeks after she was born. We liked her right away too and asked her the first night we met her if she would be Kennedy's primary. She LOVES LOVES LOVES the Dodgers and Jasmine can make a 12 hour shift go by in a flash! She always has the best stories to tell and is an AMAZING artist. Shawn has said her handwriting is so neat it could be a font. She made two of the signs on Kennedy's crib:

This one she cut everything out by hand- even the tiny banana! Kennedy did help with the foot prints, lol.

And this one she made to pick on Shawn since he is an Angels fan. (Yes the Angels and Dodgers are hand drawn. No stickers here!)

Friday she surprised us with a beautiful portrait of Kennedy. We especially love that she used Kennedy's ribbon to make the bow:

So I guess what I am trying to say is Primary Nurses are neat, but our Primaries are AMAZING!

Gail and Jasmine, thank you for all you have done for Kennedy and for us! You are amazing women and we are so happy to have you in our lives.

Katie & Shawn

TA DA!!!!!!

Notice Anything????

That's right folks! For the first time in our daughter's life and after 133 days of waiting we got to see Kennedy with nothing on her face today. No tubes, no tape, no cannula, nothing that doesn't belong there! She has been doing SO well they decided to try her with no oxygen. Now don't get too excited though. Since we live at a considerably higher elevation than the hospital chances are that she will still come home on oxygen, but for now she is getting a break and her poor little cheeks have a chance to air out. She is doing really well on her feeds and even though she is not taking as much as they would like she is still gaining weight and having an acceptable amount of wet and dirty diapers a day. They changed her formula and it is now mixed to be 30 calories instead of 27 calories. They have also lowered her bed so it lays flat now. Even though she has had a little more problems with the reflux she seems to be doing well with that change also. Since she has been lying flat her heart rate has started to get really low while sleeping (as low as 79). I spoke with the NP today about it and they are going to be watching her and may do a Ph Probe or Sleep study before she goes home to see if I can still have a monitor in case she does get sent home without oxygen. It could be a reflux thing or it could just be because she is getting bigger (7lbs 11oz).

We had a great time rooming in on Friday night. Here is my favorite pic form the night: