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.