Our Baby Kennedy

Come find us

2009-09-25T12:10:00.001-07:00

Life has been crazy too much so to keep up the blog so Kennedy is on facebook. Add her!

http://www.facebook.com/home.php?#/profile.php?id=100000206685689

Make sure to tell me who you are when u send the add please :)

Pictures

2009-06-19T08:36:00.000-07:00

Happy Birthday Kennedy!!

2009-05-11T08:28:00.001-07:00

One year ago today at 4:52pm our beautiful daughter was born by cesarean weighing 1pound 6ounces and measuring 12 ¼ inches long. The doctors didn’t tell me what they were doing during the operation and Kennedy didn’t cry when she came out so Shawn and I were left behind the curtain wondering if she had been born yet and weather or not she was alive. The thing I remember most about the operation was asking Shawn if he could see anything. He said, “No, but I think I see a chunk of you on the floor” to which I replied “Does it look important?” I don’t remember anyone telling us if she was alive or not. I think maybe they aren’t supposed to say, since its so touch and go with the micros, until after they get them into the NICU and can watch them for a bit. It was a few hours later in the recovery room that Patty, one of the NICU nurse practitioners, came in to update us on Kennedy’s condition. I was still doped up form the morphine they gave me during the operation so a lot of it is hazy but I remember her saying that Kennedy was in critical condition, but stable and that she had blond curly hair and she was feisty. She was a fighter and being feisty helped save her life. It would be 12 hours after her birth before I would see Kennedy for the first time, and ten days before I could hold her.

To look at her today you would never guess the struggles she has faced in her short life. She has relatively few scars from her NICU days, she has a perfectly round head thanks to Nurse Gail and her dedication to "beauty sleep," and she has managed to get off all her medications AND her oxygen before her first birthday. Although Kennedy doesn't eat much and is hard to feed sometimes she hasn't show any of the aversions to foods that a lot of micro preemies have, nor does she show any signs of other sensory issues. She sits, she plays and she never stops babbling. Kennedy hasn't started crawling yet, but she gets around by rolling, scooting and arching her back and pushing with her legs. She loves standing and is really good at doing it on her own if you just give her your hands to hold on to for leverage. She has just started taking big steps and bending her knees when she steps. She loves walking so much we think she might even skip crawling. Just yesterday Shawn and I watched and cheered her on as she was able to maneuver herself from laying down completely to sitting up on her own for the very first time. Every day she amazes us with something new. Shawn and I feel so grateful to have her for our daughter.

We are going to the doctors office today, so i will edit this post later and give you her 1 year height and weight

Update- appointment was changed to 18th

One year ago today...

2009-05-10T07:37:00.000-07:00

One year ago today I was in a hospital room at LLUMC waiting for the results of a formal ultrasound done the night before. It was longer a matter of if she was going to be delivered early but when. Shawn and I waited all day and never heard anything. it was probably one of the longest days of my life.

Yesterday was Kennedy's birthday party and it was a blast. I was so tired after. I can't imagine what its going to be like when she's five and I have a bunch of little girls hyped up on sugar running around to manage. She got lots of great gifts and did extremely well with the amount of people and getting passed around to people she had never met before. Soon as I download the pics I will get them posted.

One year ago today- the countdown

2009-05-09T06:50:00.000-07:00

One year ago today I had a routine ultrasound scheduled in the afternoon. On the way there Shawn and I talked about how we hoped there wouldn't be too long of a wait because we were both starving and how we really needed to get started on painting the baby's dresser so I could have it done before the baby shower and be able to show it off. We hoped the ultrasound would confirm we were having a girl. We had no idea we were about to begin the scariest weekend of our lives with most stressful, terrifying 4 1/2 month long journey I hope we ever have to face to follow.

Today we are having Kennedy's birthday party. It should be a lot more fun then we had one year ago today.

Ignorance is Bliss

2009-05-08T02:35:00.000-07:00

Today is the the one year anniversary of the last peaceful day of my pregnancy.

Sick of being sick

2009-05-03T15:57:00.000-07:00

Yep, I'm still sick. That's right I have been sick for 3 weeks and I am sick of being sick. The good news is I am feeling a lot better. I still have a bit of a cough and it seems an ear infection. The bad news is we had to miss the March for babies today. I once went down the hill with an ear infection and it wasn't fun. I opted not to try today. Kennedy still has a cough but we took her to the doctor and she said Ken was not sick. Its probably an asthmatic cough, so we have been continuing her breathing treatments and I am going to follow up with a phone call to the doctor if she doesn't improve in the next few days.

We're Still Here :)

2009-04-27T10:55:00.000-07:00

Just a quick note to let everyone know we are still here. I have been sick for almost two weeks and finally went to the drs over the weekend. I have bronchitis, laryngitis and a sinus infection. So far Kennedy hasn't gotten it, but she has started to cough a little so we are doing lots of breathing treatments to try and keep her from getting worse. We need prayers that she doesn't get sick since she was just taken off oxygen last Monday. That's right- no more tubes! for the first time in her life she hasn't had to be hooked to any type of medical equipment and we don't want her going back! Sorry for such a sort post, but you can look forward to a super big birthday update coming soon!

Adventures in Cloth Diapering

2009-04-09T21:12:00.000-07:00

I've been trying to think of ways to save money and it dawned on me recently that cloth diapers might be the answer. I had toyed with the idea of using cloth diapers during my pregnancy. I had a whole going green phase where I was obsessed with recycling and saving the planet. When Kennedy was born that idea got set on the back burner. It seemed like a huge inconvenience that I didn't need to deal with, especially when I faced the reality of bringing a sick baby home and all the extra work it would entail.
Anyway, I did the math and found that by using cloth diapers I could save $40-$50 a month. Who couldn't use and extra $50 a month? So I went to craigslist and found some cloth diapers. Today was my first day trying them out and I thought I should chronicle my adventures in cloth diapering and tell the public the low down dirty truth about cloth diapers. Here it is:

ADVENTURES IN CLOTH DIAPERING

Day1

When Kennedy woke this morning I changed her out of her disposable diaper and into a cloth diaper for the very first time. They aren't the the white square diapers of yesteryear. they are the new fancy all in ones. Basically they look like a regular diaper only made out of cloth, and they use snaps or velcro for the closure. They come in all different designs. I picked the prettiest newest looking one to try first. It was pink camo with bright pink fleece lining. and was super soft and felt fabricy on both sides. I got Kennedy dressed and put her on her blanket to play while I picked up a little. About an hour an a half later it was time for breakfast so I picked Kennedy up and she was sopping wet. As it was sinking in the she was covered in pee I thought to myself, "maybe this wasn't such a good idea". I decided to press on and changed her into a diaper with a plasticy feeling outside this time.

Before I got the diapers I read up a little on cloth and everything involved as far as "solids" go. Most website tell you to scrape the solids into the toilet. I don't know about you, but when I hear the word scrape I think with what? A stick? A spatula? What exactly do you suggest I keep in my house as a stinky poo stick? (Upright Citizen's Brigade anyone?) I think this is one of the huge turn offs to cloth diapers and really I was dreading the first one because I honestly didn't know what I was going to do. A few websites said you could swish it in the toilet, but really sicking my hand in a toilet doesn't sound that appealing either. Ken's second diaper presented me with the solids deli ma for all half a second when I realized, "duh, just use the wipe to push it in the toilet" (I'm boycotting the word scrape) So that horrible, disgusting, gross reason I didn't want to use cloth diapers really wasn't that big a deal after all. Shawn and I opted to put her in disposable for the night. I really don't want to do a sheet change in the middle of the night so for now we will keep disposable for travel and night and cloth the rest of the time.

So my cloth diaper truth for the day is: What I thought would be super gross is really no big deal, and so far they don't seem any less convenient than a disposable diaper for home use.

Capri pants, doctors, and frustration

2009-04-08T08:52:00.000-07:00

So yeah, I woke up this morning and all of Kennedy's pants are capris now. Last week I put her jeans on and thought they were starting to look a little short, but now they are mid-calf so we could really use some hand-me-downs size 6 months and up if anyone is looking to unload any.

We didn't make it to the BPD clinic yesterday AGAIN. I called Friday to make sure that everything was in line with the referral and was told it was never ordered. The nurse said from the file it looks like the pediatrician doesn't want me to follow up with BPD anymore. That made no sense to me at all since I had just spoken with the doctor at the last visit and she asked me when I was going to see them again. The doctor was out of the office and is supposed to be back today and return my call so we will see what happens from there.

News Flash!!!!!!!!!

2009-04-02T20:58:00.000-07:00

Kennedy got her first tooth today! Lower right central incisor. Boy is she grumpy :(

Quick update

2009-04-02T14:14:00.000-07:00

So we still haven't made it to the BPD (Bronchopulmonary dysplasia) clinic yet. We went down for our appointment last month and the drs office never called in for a referral so we had to be rescheduled for the 7th. They did let talk with a nutritionist about Kennedy's food and formula intake. She suggested I start adding vegetable oil to Ken's bottles and butter to her solid foods and we see where she is on the 7th. It sounded like a great plan, but then i went and got sick and even though I wore a mask and used hand sanitizer Shawn picked it up and then Kennedy got it too. Her eating really went down hill so we ended up taking her to the drs on Monday and the doctor said her lungs sounded fine and that it was probably just a cold. We increased her oxygen to 1/4 liter and have been keeping a close eye on her. It seems like today her eating is a lot better than it was and she is feeling much better, almost normal.

2009-03-21T20:34:00.000-07:00

Well it’s about time! I am actually going to give you an update in words. Don’t worry there are some more adorable pics at the bottom of the post too. So we have been doing pretty well for the most part lately. We are coming up on two months in the new house already and I only have 1 box left to unpack. We had to move Kennedy to the smaller bedroom, but I actually like the setup better in there anyway. I am currently contemplating how I want to decorate Kennedy’s new room. I don’t know if it will be modern or classic, but I can promise you it will be PINK! Ken (yes I know I said I would never call her that, but its so much easier to type) Was 26 inches long and 13 pounds 2 ounces on the 11th. She is out of almost all of her 3 month size stuff and is quickly filling out 6 months size. I am finding it hard find clothes, especially pants that fit her well. She is 6 months in length, but her waist is still much to tiny to fit 6 months. Any suggestions on where to find tall skinny clothes for babies would be much appreciated. As of her last doctors visit they were not pleased with Ken’s weight gain. We are now adding vegetable oil to her bottles and butter to her solid foods to try and boost the calories. We will see how she does on her next visit to the BPD clinic. Ken’s teacher from inland regional suggested we get her some shoes since she tends to stand on the sides of her feet so she got to wear her very first pair of shoes the other day. They are little pink crocs and she had on her Minnie Mouse shirt that day so she looked like she was ready to head off to Disneyland. Very, very cute!

Random Pictures

2009-03-17T20:59:00.000-07:00

March for Babies

2009-03-10T06:34:00.000-07:00

Every year the March of Dimes holds a March for Babies in over 900 communities across America to help raise funds for research to help babies born to soon or sick. May 3rd they are holding an event in Loma Linda near the hospital where Kennedy was born. Shawn, Kennedy and I are pleased announce the creation of team Our Baby Kennedy. We wanted to create a team to honor of our beautiful daughter to celebrate her life and how far she has come. Everyday we are grateful that she is still here with us. We know so many other families that didn't get the fairy tale ending like we have. Without the research funded by the March of Dimes Kennedy would not be here with us today. We are asking everyone we know to help us reach or team fundraising goal of $500. I know times are tough right now and money is tight but even a donation of $1 is a step toward making sure that one day all babies are born healthy. So far just the three of us are walking but team Our Baby Kennedy would love to have some company so if you would like to join us use the link below to visit our team page and click on " Join this Team". You can also use the link to make a secure online donation to team Our Baby Kennedy.

Click HERE to view our team page. You can donate securely online, sign up to join team Our Baby Kennedy, or look for a walk in your area.

Help give every baby a fighting chance!

I'm back!

2009-02-20T09:52:00.000-08:00

We finally have Internet!!! Yay! So we have been living in the new house for 21 days now and we love it. It is so close to all our friends and they have pizza delivery out here, something we have lived without for the past three years. Trust me you don't know how fantastic it is to have hot food delivered to your house until the option is no longer available. We have most everything unpacked and I am starting to get back into a routine with Kennedy. She has been doing great lately. we have tried all sorts of new foods and her teacher says she is at her actuall age level with her speech. Thats right her real age, 9 months, not corrected. Shawn and I are so proud of her. Not too much else exciting going on around here

Hello from the new neighborhood!

2009-02-06T13:54:00.000-08:00

Just a quick line to let you all know we got moved last weekend. Verizon has a conspiracy against me so still don't have any Internet and don't expect to until at least the 12th. I will be sure to post soon as it is up and running. Still looking for homes for the cats so keep the word out.

Thanks!
Katie

Goodbye, Hello

2009-01-29T18:11:00.000-08:00

It’s true we are moving! Since Kennedy got to break the big news, I will fill you in on the rest. Right after I posted the blog about looking for a house I went online and browsed our local paper’s classified ads. There was a 3 bedroom 2 bath house in the area we were hoping to live in our price range and it had an address so I could go see what we could get the price we could afford. I made the call and it was still empty and they were doing work on it so I decided to drive by the house and look t the outside. I map quested it and off Kennedy and I went. It was the first time I picked up on the spur of the moment and went somewhere with Kennedy with out any advance preparations. We were following the directions that map quest gave us and as I started getting closer I started thinking how familiar everything looked. Then I realized that I was going the same way Shawn and I drove a while back to look at the house that my friend Jenn and her husband were buying. Turns out the house I was looking for was two houses over and three houses up from their new house. If the price+ the size + the location of the house didn’t sell me then that sure did. How awesome it would be to live so close to my best friend! The house was older, but nice on the outside and since it was so close to D&J I decided to call the office back and ask if I could peek inside. They said it would be fine so Kennedy and I went in. I filled out the application to rent and then called Shawn to see if he could swing by and sing the app. before I turned it in. Shawn came by with a buddy from work. While they were there the owner of the house came by to check on the progress his crew was making and it turns out that the guy who owns the house has know Shawn’s friend from work for the past 15 years. Fate, luck, divine intervention- what ever your flavor it must have been on our side because by Monday afternoon they offered us the house on the condition we thinned our herd of cats. It was an exceptionally bitter sweet moment for me. We were getting this house that was so much more than we expected to find in a great area within a five minute drive of most of our friends and a very short walk from two of them, but we were also forced to choose between all our cats. I spent the better part of two days crying every time one of them would walk past me. Anyone who knows me knows how much I love my cats. It was a horrible decision to make and in the end we did what we thought would be best for all involved. The brothers, Jackson and Julian, have never been apart and Jackson is already depressed about having Kennedy take his place as my constant companion that we just don’t think he could take it if he and his brother were separated. I even joke that we would come home to find him a tiny noose and a paper with a kitty paw print as a suicide note. Pants and Gray were ok before us and they are so adaptable they will be fine where ever they end up going so for now I am doing my best to look at it as another rescue only this time they got to be extended guests in our home. Today we are supposed to go and get the keys for the house. Last Shawn and I saw the house it was still under construction so I am super excited to see the inside all done. They were completely redoing the inside- New carpet, paint, kitchen counters all kinds of good stuff. I will post pictures soon as I get some. Kennedy had an appointment at the BPD clinic on Tuesday. She weighed 12 pounds 10 ounces and was 23 ¾ inches long. They lowered her oxygen from ¼ to 1/8 and increased her dose of Pepsid since she was still getting the same amount as when she left the NICU and has almost doubled he weight since then. She is off Reglan and Diuril completely and they ordered some blood work to see if we can wean her off the Phos-Nak. They still aren’t as happy with her weight gains as they could be but she is doing ok and we talked about starting solids. I had already started Kennedy on rice cereal a while back so Tuesday night I made her some sweet potatoes and she loved them. She has had them everyday since without a reaction so far so I think I will be trying something new soon

A Message from Kennedy

2009-01-23T08:20:00.000-08:00

Hi everyone! Thanks for reading about me, I am glad you enjoy the blog Mommy does. I bet your asking yourself right now, “If little Miss Kennedy is glad, then how come she looks so sad in this picture?” You see, Mommy and Daddy told me that we are moving very soon. I know you’re thinking that I am only eight and a half months old so what’s there to be sad about. Its not like I am going to have to change schools or anything. But I am sad. I’m sad because I am going to have to leave behind two of my best friends, and that’s why I asked Mommy If I could have a little space on the blog. Mommy and Daddy said our new house is real nice, but that we can’t take all our kitty friends with us. My two best kitty friends are Panther and Mr. Gray. I love them cuz they let me pet them and grab their fur and sometimes when Mommy is feeding me Mr. Gray rubs his head on my hand and purrs. I am so sad about not being able to take them with us and mommy is too. She cried for two whole days when she found out and she still gets a little sad every time they come to snuggle with her. I guess cuz she is going to miss them so much too. I’m hoping that someone who reads Mommy’s blog about me will be looking for two of the best kitties in the world to be their friend and come and give Mr. Gray and Panther a good home. About a year ago Mr. Gray would come around the house, but he was too scared to let anyone touch him. One night Mommy gave him turkey and catnip and tamed him. The next night he showed up with his friend Panther and they never left. Mommy and Daddy call Mr. Gray their karma kitty. They said he is so sweet and loving that he came to us because of all the kitties they have saved and found homes for in the past. He is really fluffy and all you have to do is say his name and he starts purring and doing dough paws. He loves to be petted and curl up next to you. Panther is a all black kitty. At night when he sleeps on the couch and the lights are off you can’t even see him. Just two eyes and sometimes a pink tongue if he is taking a bath. He is super sweet too and will soak up all the attention he can get. He also loves when you go outside with him. He likes to frolic and play. Both kitties are neutered and like to be able to go outside, but they also need to snuggle on the couch inside too. They are best friends so it would be good if they could find a home together, but they would be ok if they had to be split up. They are very adaptable and would be ok in a home with other cats. We don’t have any dogs, so I’m not sure how they would do with dogs, but I have seen Panther stand up to a few in the yard and he sure didn’t look scared to me. So, if you know anyone how might like to have two of the best kitties ever as their pets can you pretty please with a cherry on top and sprinkles have them e-mail my Mommy? They can send it to ourbabykennedy@verizon.net . I will be sure to let you know when we find them a home so until you see it on the blog we are still looking. Ok, that’s all for now. Mommy is going to post pictures of the kitties for you to see. Blog to you later.

Kennedy

Panther

Mr. Gray

I've been tagged

2009-01-20T09:17:00.000-08:00

I've been tagged by Tricia, so here it is, the 4th picture in my picutre file:

It's a picture of a surprised Kennedy with a shirt on her head. Since the people I know who have a blog have already been tagged i'll leave it up to you- Make a blog and post the 4th picture in your "my pictures" file.

Have fun!!

We need your help!

2009-01-16T08:29:00.000-08:00

This blog has helped us in the past so we are turning to it again. We need your help finding a house. Due to ongoing issues with Kennedy I am unable to work out of the home right now, and it is going to be that way for a while. Where we live we rely on propane instead of natural gas and it is incredibly expensive. Since Kennedy has been born we have been receiving a great deal of help from my parents but we don't want to have to continue to rely on them. Shawn and i have decided the best way for us to be able to save money it to cut back on our housing expenses but we are having a hard time finding a place to rent that we can afford. What we are hoping is that one of our readers might know someone who has a rental house that can help us out. We would prefer it be in Hesperia since it would be a shorter drive for Shawn to work, but we are open to Victorville, Apple Valley, and Adelanto as well. It would need to be on natural gas and at least 2 bedroom 1 bath but preferably 3 bedroom 2 bath. We are planning to stay a few years at least so it would be nice if it had a small yard for Kennedy to play in. If anyone knows someone who would like to help out 5 cats, 2 parents, and 1 adorable baby please email me at ourbabykennedy@verizon.net to discuss rent and details.

Thanks!
Katie, Shawn & Kennedy

Happy New Year!

2009-01-13T08:55:00.000-08:00

Ok, I know its almost half way though the month and these belated greetings are getting a little old, but better late than never right? I was going to write yesterday, but it was my birthday and I just didn't feel like it so I vegged out instead. Truth be told the reason I have been so tardy with my posts lately is because of my addiction. That's right I'm not afraid to say when I need help. Hello, my name is Katie and I am addicted to World of Warcraft. About a year, year and a half ago Shawn bought World of Warcraft but our computer wouldn't run it. Well when my dad gave us this new to us computer he made sure it could run the game. At first I didn't want Shawn to put it on the computer because I didn't want him to get all wrapped up in it and be on the computer constantly, but I caved and after 3 days of downloading patches there it was a shiny new icon on my desktop that I was sure I would never use. Oh that tricky Shawn, he got me to make a character under the guise that it would be fun and I didn't have to play if I didn't like it but I did. It was only a few days after Thanksgiving that we started the game and already I have switched guilds a couple times, I'm working on my second character, I chase down alliance with all enthusiasm of a lioness after a tasty gazelle, I talk about how I had to spend 3 days in Mulgore farming so I could finally buy my mount, and I would love to have that girls shirt with the Horde logo on it. If you have no idea what I am talking about then its for the best, don't go googleing or anything or you too might get sucked into the online sensation that is World of Warcraft. By the way you know how I was worried about Shawn spending all his time in front of the computer? He spends maybe a tenth of the time I do playing so I guess I should learn to keep my mouth shut. Can anyone say "moted." lol

In the name of the New Year, looking back, and fresh starts I hereby declare this Kennedy's official New Year update. Hopefully next year this time, maybe sooner :0) ,I will do another big update for the year and we can look back and see how much Kennedy has grown and changed. Can you believe that Kennedy turned eight months old on Sunday? I can't. I know they say time flies and you don't believe how fast they grow, but its so true. Its even weirder i think for me because even though Kennedy is 8 months old she still looks like she is only 3 or 4 months plus she has only been home for 3 months so it really doesn't seem like that long. Every day she amazes me so much. She is always doing something new, or better and exceeding our expectations. She laughs at daddy all the time now and always has a smile for everybody. We are working on strengthening her core so she can sit up and she loves doing baby crunches. Her hair is really starting to come in, although, only we really notice it since she is still such a baldy. No teeth yet, but for the last week or so I have been letting her have cereal so she can practice eating solids. Most of it gets spit out, but she has a good time with it and seems to look forward to it when she gets set in her high chair. Yesterday she even opened her mouth real wide for the spoon when I said "ahhh." She rolls from her back to both sides evenly now but hasn't been able to make it all the way to her tummy. She is reaching well and has become an expert at getting her hand to her mouth in one try. She cant hold the bottle yet and has difficulty getting the pacy into her mouth the correct way but every day she gets a little better. Shawn and I have her on a schedule for feeds (8, 12, 4) and have recently stared a bed time routine. She gets a bath, bottle, and book and is in bed by 8pm. She usually wakes around 7 am and I am currently trying to figure out the best nap schedule for her. She is still eating poorly. On good days she will take around 530ccs (about 18 ounces) for the whole day. When she came home from the hospital she was taking about 450ccs ( about 15 ounces) and that's what the bad days still look like. It was ok but she keeps getting longer and not gaining much weight so she is getting to be a pretty thin baby and she is starting to loose some of her rolls. Its to too bad yet, but enough that I am anxious to talk to the doctor about it next week. We have weaned her off her Diuril (diuretic). Ten days ago we switched her reglan to twice a day instead of four times and she was doing so well on it that Sunday we took her off all together so hopefully she will continue to do well and it will be one less medication she has to have. So for right now she is on Pepsid 2xs/day, Phos-Nak 3xs/day, Eyrthromicin 4xs/day, and a multi-vitamin once a day. Last week Kennedy weighed 11 pounds 7 ounces which was two ounces more than last month- not a lot but still going up and up is better than maintaining and way better than loosing. She is wearing size 3 months clothes and I have a feeling she will be in them for a while since I just got rid of the last of the newborn size stuff just after Christmas. Even though Kennedy is still 3 1/2 pounds from the weight limit on her bassinet Shawn and I went ahead and retired it anyway. We both decided that we aren't quite ready for her to sleep in her own room yet so we moved her crib into our bedroom.
I almost forgot to tell you! Kennedy way given an apnea monitor to wear at night when she came home. Mostly is was given to us because I kept pushing for one after she had a few heart rate drops close to her discharge date and because the insurance didn't put up a fight when the doctors requested one for us. We had alarms since she had been home, but as far as we could tell they were all false and they usually only have you keep the monitor until the baby is 6 months adjusted so a few weeks ago Shawn and i decided to let Kennedy try a night off the monitor and we haven't been back since. The discoloration where her leads went has improved and Kennedy still scratches her chest but far less frequently than when she had to wear the leads every night. All in all Kennedy is doing great. Amazing considering where she was eight months ago. Well that's all for now. Type to you soon!

Christmas!

2008-12-29T12:23:00.001-08:00

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!

2008-12-29T11:40:00.000-08:00

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

2008-12-19T09:36:00.000-08:00

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!

2008-12-08T11:10:00.000-08:00

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....

2008-12-03T06:24:00.000-08:00

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!

2008-11-25T17:53:00.000-08:00

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

2008-11-19T11:57:00.000-08:00

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

2008-11-16T09:41:00.000-08:00

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

2008-11-14T14:22:00.000-08:00

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

2008-11-13T18:30:00.000-08:00

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

2008-11-12T06:31:00.000-08:00

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.

2008-11-11T13:42:00.000-08:00

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

2008-11-06T15:28:00.000-08:00

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

2008-11-03T13:04:00.000-08:00

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.

2008-11-02T19:08:00.000-08:00

10 pounds 2 1/2 ounces- WOW!

A big girl has a busy week

2008-11-02T16:18:00.000-08:00

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!

2008-10-26T18:04:00.000-07:00

Remember this picture?

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

Well look at her now!

1 month home

2008-10-26T16:29:00.000-07:00

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!

2008-10-22T14:30:00.000-07:00

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!

2008-10-13T17:59:00.000-07:00

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

2008-10-03T06:47:00.000-07:00

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....

2008-09-27T17:17:00.000-07:00

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!!!!!!!!

2008-09-27T02:08:00.000-07:00

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

2008-09-23T21:52:00.000-07:00

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

2008-09-21T18:38:00.000-07:00

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!!!!!!

2008-09-21T18:08:00.000-07:00

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:

Some good news and some not so good news

2008-09-18T09:47:00.000-07:00

Good news first- Wednesday when I got to the hospital Kennedy didn't have her NG tube! They pulled it and decided to try tough love. Basically she is ad lib on her feedings. She can eat what she wants when she wants but they will wake her if its been longer than 3-4 hours since the last feedings. They are going to watch her for a day or two and see if she takes most of her feedings- hopefully 90% or more.

Not so good news- Kennedys ROP has progressed to stage III in both eyes and she is going to need laser surgery to try to keep the retina from detaching. Yesterday we went and signed consents for the surgery and now they think it will take place next Tuesday. They will have to sedate her, but hopefully they won't have to give her so much that she has to be re-intubated. Also if she is doing well on her feedings she will have to wait for the eye doctor to ok her before she can be discharged.

Early this week Shawn and I decided I would return to the Ronald McDonald House on Monday if we didn't have a discharge date by the weekend. We thought it would be best for me to go in and feed her to see if she would do better with me than the nurses. Since she seems to be doing well on her feedings we are hoping she will continue in that direction, but our plans are still for me to return to the Ronald Mc Donald house next week. Hopefully they will be able to get me in before the surgery on Tuesday. We are still planning to room in tomorrow night.

Rooming In

2008-09-14T16:48:00.000-07:00

Shawn and I were supposed to room in on Friday night, but there was some confusion and the wrong date was written down so we roomed in last night (Saturday) instead. It was so much fun! We even got a few hours of sleep. We got to the NICU at 8pm and by the time we got Kennedy transferred to the rooming in room and settled in it was 9pm and time for a feeding. The rooming in room was way different than Shawn and I expected. We were thinking it would be more sterile. Instead it was like a little hotel room. It had a nice size bathroom, a closet, a day bed with trundle, a glider, a TV and sink and counter space to fix up formula and organize her meds and supplies. After the feeding Kennedy fell asleep so we waited for her to wake up and then gave her bath. She promptly ripped off her nasal canula and pulled out her NG tube. I finished her bath as quickly as possible while Shawn held her canula in place. Soon as she was out of the bath and wrapped in a towel Shawn got some more tagaderm and we taped her canula back in place. She was hungry and crying so we decided to go ahead and feed her and deal with the NG tube later. Lucky for us she managed to take the whole bottle except one cc and even took her meds by mouth. After a couple hours our night primary Jasmine helped me place a new NG tube before her next feeding. She did well with that feeding also and we only had to gavage 5 ccs. I was glad we got the NG back in though since she had quite a few meds due with that feeding and I doubt I would have gotten her to take all of them by mouth. I think Kennedy was really enjoying having us there. She was up most of the night and gave us quiet a few smiles (a skill she has recently acquired and I have yet to catch on film). We were all having so much fun we really didn't even try to sleep until after the 3am feeding. Up to that point her med schedule only allowed for about 45 minutes to an hour of time between feedings and more medications. All in all we had a great time and other than all the meds and checking the monitor when it alarmed I think it went much like the first night with baby for any new parents. We are scheduled to room in again next Friday night if she can't come home before then.

The Rooming In room

Shawn and Kennedy

Kennedy Playing

Big Steps

2008-09-10T08:13:00.000-07:00

Yesterday was a good day. Since Kennedy was so early she had to take a car seat test before they can send her home, so our daytime primary nurse decided we should go ahead and do the test yesterday since there has been so much talk about going home lately. She passed with flying colors of course! She did have a little help from monkey. She liked her car seat and was having a really good time checking everything out, but she fall asleep towards the end. I also spoke with the discharge coordinator about setting up the oxygen delivery and it looks like the insurance company is going to give us a portable monitor to take her home on. AND the same company who will deliver her oxygen will also be delivering her feeding supplies- which includes her formula. Since it is high density formula is is covered by insurance which is fantastic because it is so much more expensive than regular formula. So now we are just waiting for Kennedy to tell us she is ready to come home. Hopefully she will be able to nipple all of her feedings by this weekend. If not I will be learning to place her corpak on Monday. That's that lovely yellow tube that goes up her nose and into her stomach. Oh yeah I almost forgot! The corpak is now a NG instead of an NJ. That means she is finally able to take an entire feeding in her stomach instead of part of it going directly to her small intestine.

I'm A Big Kid Now!

2008-09-09T07:53:00.000-07:00

It's official- she is huge! 19 inches long and 7 pounds 4 ounces. Her preemie onesies are getting hard to button and she has already outgrown on of her sleepers. I am taking some newborn size clothing down today to see how if fits. She has been doing well on her feeds. They have dumped the increasing by 3 ccs process and have decided to offer her full feedings and allow her to eat as much as she wants. She did really well with it yesterday and only had 4 of her 8 feedings fall short of 60ccs. Shawn and I have something very exciting to look forward to on Friday. We will be rooming in! The NICU has a private room where we can spend the night with Kennedy. She will be hooked to all her monitors and the readings will be transmitted to a monitor outside for the nurse to keep an eye on her. Shawn and I will be responsible for all her cares- feedings, medications, oxygen levels ect... but the doctors and nurses are there in case we need them. Basically its a trial run before they send her home. Of course that doesn't mean she gets to go home after we room in. She still has to meet her feeding requirements but it is one huge step closer to going home and the very first time Shawn and I will be able to spend the night with our daughter and care for her on our own.

2008-09-09T07:48:00.000-07:00

She has already learned how to do the pouty lip!

Update for the week

2008-09-05T13:48:00.000-07:00

Kennedy's last eye exam didn't go so well. Her R.O.P has progressed to stage III in her right eye. ROP is a common eye problem for preemies for more info on it click here and here. So they are going to do another eye exam in a week or two and from there they will probably need to laser surgery to keep it from progressing and causing retinal detachment. Her nipple feedings were changed to increase by 3ccs every 12 hours. She is currently at 39ccs but has started to level out. Eating is hard work for a preemie and while her stomach is handling the increased volume well she just doesn't have the energy to eat all that in one sitting. She now needs to get to 63ccs to be considered on full feeds. Once she gets to full feeds they will keep her for another week or so and make sure she can nipple all her feedings and is gaining weight well before they will send her home.

Coke? They gave my kid coke?

2008-09-02T07:50:00.000-07:00

So yesterday Kennedy had her first soda- a Coke. Her NJ tube was clogged and because it is such a hassle to change they attempted to unclog it before trying to replace it. Well in this age of modern medicine it never ceases to amaze me the tools that they use. Apparently the Coke eats through the enzymes in the formula and can help clear a clog. They gave her 3ccs to try to clear the clog, but we aren't sure how much actually got since the clog wasn't cleared. Apparently Mountain Dew works better but since its a Seventh Day Adventist and caffeine is off limits it was easier to find a certified nurse to replace the tube than a can of the Dew. So they got the tube replaced and confirmed placement around 4pm and were able to restart her continuous feeds. She is doing well on nippling and up to 24 ccs as of yesterday.

2008-08-29T17:33:00.000-07:00

It's day 110. I sit in a rocking chair holding my daughter. She is awake, but drowsy. She stares up at me and I look down at her. I look at her big blue eyes. They are darker than mine but I think they will stay blue. She is so beautiful- so... perfect. It's almost time to go. Look how big she is now. She used to be so tiny her hand was no bigger than my thumbnail. I tell her how much I love her and how much I am going to miss her tonight. I promise her that I will be back tomorrow and that daddy will come too. I rock her and sing her our lullaby one more time for the day. When it is over I give her one more kiss and stand as gently as possible. I place my baby in her crib careful not to wake her. I can't leave when she is awake- it breaks my heart to see her watch me walk away. I arrange all of her cords and tubes and quietly slide the side rail up. I tell her nurse that I won't be able to come back tonight but I will call to check on her. I say my good byes and I walk to the door. I stop and I turn around for one last look. She is still asleep. I linger for a moment, push back tears and force myself to walk down the hall and out of the NICU. I check my voicemail while I wait for an elevator. One message. It's from Shawn. He wants to know how Kennedy's day was. I call him back while I walk to the car. As I unlock the door I tell him how much she weighed, how well she did eating, and the results from the MRI. We say I love you and hang up. I put the key in the ignition but i hesitate for a minute before I turn it. I can see it. I can sit in that chair with my daughter and I can see the finish line. It's so close I can almost touch it. Almost. It's there, but its just out of my grasp. I head out of the parking lot and towards the freeway. I hope I don't get stuck in Vegas traffic. It's a three day weekend. I'm at a stop light. I start to cry. I am going home empty handed again. There is a car seat behind me, but no baby. I have to go home to an empty room filled with her stuff. An empty crib and a dresser full of clothes and diapers, but no baby to put them on. Green Light. Turn left. Now right. Now left again onto the freeway. Try to stop crying. If I don't stop crying I wont be able to see to drive. Everything is ok. I tell my self not to be so selfish. Some parents don't ever get to take their baby home. One couple didn't even get to hold their baby before he passed away. At least my baby is still alive. She will come home, just not today. Leaving never gets easier. 110 days and its still just as hard as the first. I pray. Please God help me get through just one more day.

2008-08-26T21:39:00.000-07:00

Just for Fun

2008-08-26T21:06:00.000-07:00

Kennedy is doing well today. The flow on her oxygen is down to 1/4 liter. Hopefully she will do well enough to go down some more and not need oxygen when she comes home. Speaking of coming home- the only thing keeping Kennedy at the hospital right now is feeding. They say if she can get up to 2/3 full feedings (60ccs)by bottle they might consider sending her home with the NJ tube for continuous feedings by pump for what she couldn't eat with a bottle. So now that there is talk of going home how about a poll about when she is going to come home? Post a comment with the day you think Kennedy will come home. Once a day is taken it cannot be used again.

Shawn picks September 11th
I pick September 22

Winner gets the satisfaction of being right!

Home again and up on a soap box!

2008-08-24T09:17:00.000-07:00

So after 70 days in the Ronald McDonald House I came home this past Tuesday. Being down there by myself had gotten to be too stressful. Now I am back at my house and driving daily to be with Kennedy. I am hoping it will give me a few hours of mental down time each day. I loved being so close to her, but at the same time when the hospital is literally 2 minutes away you can never seem to just let your mind relax. I have seen the doctor and I am also trying to find some version of mother's little helper that will take me through this with my sanity still intact.
Yesterday Jenn had some wedding stuff to do in the area so she took me down the hill. While we were having lunch she told me about a person on the baby center board that her sister visits who pretended to have a preemie so that she could collect donations and keep the money. She even stole pictures of other peoples preemies and posted them as her own. I cannot express how disgusted I was to hear this. I wish I could have five minutes alone with that person. No one- and I mean NO ONE other than another micro preemie mom can even begin to imagine what we go through on a daily basis. I have respect for every parent in the NICU and I am sure their time there is the most trying time of their lives, but don't even try to tell me you know how difficult and hard it is to do this because your kid was in the NICU for a week, or two or even a month. They have no idea. 15 weeks- 105 days- that's close to 1/3 of a year. That's how long my child has been away from me. That's how long I have wished every night for her to be home, have prayed that she will be ok for just one more day, that I have spent between 3 and 10 (but most often 6) hours a day in the hospital watching my daughter hooked up to monitors. I don't sleep at night unless I'm medicated. Most of the moms on my mircro preemie board are on some type of anxiety or anti-depression medication, most have had some counseling and and some have been diagnosed with Post-Traumatic Stress Disorder. I don't mind admitting my weaknesses. I think it makes you a stronger person to be able to do so and I don't say it so people can pity me. The last thing I want or need right now is pity. I say it because I want that person to know or anyone else who might even consider doing something like that to know what kind of situation they are taking advantage of. I suppose there have to be all types in the world to make it work, but I have faith that Karma will take care of this person.

Ok Im stepping off my soapbox now.

Video

2008-08-22T06:56:00.001-07:00

Shawn fixed the video so give it another try if you haven't see it yet. :0)

How Preemie Moms are Chosen

2008-08-21T06:43:00.000-07:00

~*~How Preemie Moms Are Chosen~*~
(Erma Bombeck)

Did you ever wonder how the mothers of premature babies are chosen?
Somehow, I visualize God hovering over Earth, selecting his instruments for propagation with great care and deliberation. As he observes, he instructs his angels to take notes in a giant ledger.
"Armstrong, Beth, son. Patron Saint, Matthew.
Forrest, Marjorie, daughter. Patron Saint, Celia.
Rutledge, Carrie, twins. Patron Saint...give her Gerard. He's used to profanity."
Finally, he passes a name to an angel and smiles.
"Give her a preemie." The angel is curious. "Why this one, God?
She's so happy."
"Exactly," smiles God.
"Could I give a premature baby a mother who knows no laughter? That would be cruel."
"But does she have the patience?" asks the angel.
"I don't want her to have too much patience, or she'll drown in a sea of self-pity and despair.
Once the shock and resentment wear off, she'll handle it.
I watched her today. She has that sense of self and independence so rare and so necessary in a mother.
You see, the child I'm going to give her has a world of its own.
She has to make it live in her world, and that's not going to be easy."
"But Lord, I don't think she even believes in you."
God smiles. "No matter, I can fix that. This one is perfect She has just the right amount of selfishness."
The angel gasps, "Selfishness?! Is that a virtue?"
God nods. "If she can't separate herself from the child occasionally, she will never survive.
Yes, here is a woman whom I will bless with a child less than perfect.
She doesn't know it yet, but she is to be envied.
She will never take for granted a spoken word.
She will never consider a step ordinary.
When her child says momma for the first time,
she will be witness to a miracle and know it.
I will permit her to see clearly the things I see--
ignorance, cruelty, prejudice--
and allow her to rise above them.
She will never be alone.
I will be at her side every minute of every day of her life
because she is doing my work as surely as she is here by my side."
"And what about her Patron Saint?" asks the angel, his pen poised in the air.
God smiles. "A mirror will suffice."

Kennedy's 1st Nipple Feeding.

2008-08-20T10:15:00.000-07:00

IT TAKES A FEW MINUTES TO LOAD AND PLAY ALL THE WAY THROUGH SO BE PATIENT.

Liver Biopsy Results

2008-08-19T06:44:00.000-07:00

Yesterday afternoon the Gastro Interologist gave us the results of the liver biopsy. No biliary atresia :0) Instead She has Intraheptic Hypoplasia. So biliary atresia means the big bile duct from the liver to the intestines is blocked or too narrow- what she has means that there are too few small bile ducts inside the liver. Biliary Atresia means surgery right away and a liver transplant sometime during the life time. With the hypoplasia it will be a few years before we will know if she is going to have problems that will require a liver transplant. What we hope will happen is that as she gets older and her liver grows that the bile ducts inside of it will widen and better be able to create and distribute bile. If not it can cause cirrhosis of the liver and will need a transplant somewhere down the line. For now it means she is not able to digest food very well. Also she has the problem with her stomach emptying into her intestines so the plan is to slowly increase her nipple feedings (right now she is at 3cc/3hours) to try and get her to tolerate feedings in her stomach. She is also on the NJ feedings still until she can get up to full feeds by mouth. They are putting her on special easy to digest formula and adding special fats and vitamins to it in hopes that she will be able to absorb the nutrients she needs despite the lack of bile. The ideal situation would be her feeds by mouth would slowly increase till she gets to about 2/3 full feedings by mouth then she could come home with an NJ tube in place to make up for the rest of her feedings as we continue to increase the oral feedings here. She will most likely come home on oxygen as well. If she cant tolerate feedings in her stomach then she may have to have a surgery but we are trying not to think about that until we come to that point.

Last two weeks update

2008-08-13T12:55:00.000-07:00

Last night was pretty horrible. I was home for the night and went to the big freezer to see if if there was anything good in there and to my complete horror it was not working. My milk has dried up so I can't pump anymore and that freezer had all of my breast milk in it. 140 bottles of breast milk maybe enough for a week for Kennedy. Out of 140 bottles I was able to save 16 and the rest had to be thrown away. I was completely devastated. I was having a hard time dealing with the fact that I could no longer provide Kennedy with breast milk, but the fact that I had 3 months worth of milk in the freezer was helping. At least I was able to give her everything I could and it was a good start, but now all of it is gone. I am sure it is hard for anyone to really get how important it was for me and why loosing it was such a big deal. It was the only thing that I could do that I had planned on doing from the beginning- before Kennedy was even born. It was my last tie to a idea of a normal pregnancy. I fought for every last drop of that milk. My supply was low to start with and I had even taken a prescription to try to increase it, but pumping doesn't have the same effect as a baby at the breast.

This morning I called to check up on Kennedy since I am running a little late getting to the hospital and they said that tomorrow they are going to do a liver biopsy. Hopefully this will give us an answer to her GI problems and why she is not getting better from the jaundice. Here are the last few journal entries to catch you up on what brought us to this point.

8/5/08 Tuesday
I hate the NICU roller coaster. Last Wednesday Kennedy was taken off the vent. She is on an oxygen blender hooked to the wall, but no longer requires a machine to breath for her. Her feeds were also increased and by that Saturday she was up to full feeds in her jejunum. She was taken of TPN and lipids and also had her PICC removed. It made me feel so close to coming home I could almost taste it. Then they started her on bolis feed to test her stomach. Those only lasted two days before they were stopped because of high residuals. Monday they did an ultrasound to look at her stomach and where it empties to see if they could find something wrong. The ultrasound came back normal so today they did a gastric emptying scan. They feed her radio active dye and then use an xray machine that takes movie type images to watch how the dye moves through her system. So for the next 24 hours she is little miss radio active and has to have a special trash can for all her diapers and soiled linens to be properly disposed of. Also I have to wear gloves to change her diaper with seems pretty stupid to me since I am only touching a diaper and she had to eat the stuff. So the scan told us what we already knew- she has extremely slow motility and very bad reflux. Where a normal baby would have 50% of their food left in their stomach after an hour she had 95%. They have no idea why so tomorrow they are going to have the GI team look at her.

8/11/08 Monday

Today Kennedy is 3 months old. She weighs 5lbs 12oz and is 17.5inches long. Because of the results of the gastric scan the GI team came to look at her Friday and do an Gastric endoscopy. They used a little camera with a light attached to look at her esophagus, stomach and duodenum. They didn't see any blockage or webbing that would prevent her from moving food out of her stomach. What they said it looks like is a paralysis of the stomach. The stomach cant contract to push food into the intestines. They are starting her on a med whose side effect is to make people have an extremely upset stomach. They are trying to give her enough to make her stomach cramp up without giving so much that it will cause her to vomit. Also since being on full feeds and off TPN her jaundice has not gotten better so they did a HIDA scan. Its another nuclear med thing, but this time they inject the radio active dye into her and watch how it travels from the liver through the bile ducts. Basically it showed that her liver is either not producing bile or the duct is too narrow to let it pass. The GI team and the surgeons are reviewing her chart and are supposed to let us know where we go from here. In the mean time they are doing a ton of blood work.

8/13/08
So that brings us to today. All I know is they are doing a liver biopsy tomorrow and the rest I will find out when I get down there. For know keep us in your prayers.

Recent Pics

2008-08-12T20:28:00.000-07:00

COOPER

2008-08-09T16:55:00.000-07:00

WELCOME TO THE WORLD COOPER!!!
Today at 2:16pm Cooper Clayton was born to proud partents Mike and Sarah Clayton and big brother and big sister Eric and Jennah. So from one Clayton family to another Congratulations! Kennedy can't wait to meet her new cousin.

Thank you! Thank you! Thank you!

2008-07-29T10:19:00.000-07:00

First let my apologize for for taking so long to say this thank you. Since I am not home much I don't have access to email so I am kind of in the dark as to the day to day happenings of the blog and paypal account. I just checked my donation page and was surprised to see we have had some donations. I would really like to send a big thank you to all of you who have donated so to Pam C., Glenn M., Donna W., Bree P., and Penny C. Thank You! Thank You! Thank You!

Sunday July 27th

2008-07-28T20:52:00.000-07:00

Today when we arrived in the NICU our primary nurse met us in the scrub room. She came to explain to us what was going on in the room next to us (which you can see into and hear from our room) and make sure that if we wanted to spend time with Kennedy we should now exactly what was happening in the next room. They were taking a baby off of life support, we both decided that we say hello and return later mainly because we knew some of the heartache but couldn't comprehend the complete grief and sorrow that would be in the NICU at that moment, I don't even want to imagine the pain that come with making the decision to take your child off of life support, watching them breathe their final breaths. My heart goes out to that family whoever they are. Everyday in the NICU you see joy and sadness, hope and disappointment. The NICU is a strange world and it has been our home for 77 days. Today made us realize just how lucky we are and how far we have come. We have skated past so many of the challenges that were possible to us. We still have our problems to over come and I am sure more will present themselves but we truly have been blessed. Each day Kennedy continues to show progress. She is up to 8CC's per hour on her feeds and is only 5 CC's away from having her TPN discontinued. Today her bloodgas was so good they took her off the NIPPV and put her on CPAP and after the switch she was doing so well they decided to take her off the Hudson prongs and try her on a Nasal Cannula again. Hopefully her blood gas will be good enough in the morning to leave her on them. Shawn and I are thankful for every small victory that brings us one step closer to coming home.

Friday July 25th

2008-07-28T15:35:00.000-07:00

Another week has gone by and Kennedy is a little bigger and a little closer to coming home. She is up to 5 lbs. 10 ozs. and measures in at 18 inches long. She has been doing well with her feedings and on Thursday (24th) they started to up her feeds a full CC per hour rather than a half CC every other day. She now is at 7 CC's per hour continuous through her feeding tube (goes directly into her lower bowel). She is still on the NIPPV but they started lowering her settings in hopes to wean her down to the CPAP. She is getting to be a lil chunker. She has adorable little rolls on her thighs and neck!! Her eyes are still blue, but a little darker than mine. Her hair is eithier blonde or light brown depending on the light. Shawn is trying cut gas costs and miles on the car (not to mention the physical aspect) so he is only coming down Thursday through Sunday. It makes for a lonely 3 days, but it also makes me look forward to Thursdays so much more. Thanks to some very generous donations we will be able to stay in the R.M.H. through the end of August. Hopefully Kennedy will come home around then or before.

Thank you everyone for all their love and support.

Dear Carrie & family

2008-07-20T21:20:00.000-07:00

Dear Carrie,

Even though we have never met in person, and I wouldn't know you if we bumped into each other in the street I consider you to be an angel. Tonight (Thursday) Shawn and I arrived in the NICU and were told we had mail. The 1st card I opened was from Maddy and I almost immediately started to cry. The cards from you and your family are SO SPECIAL to us!!!! I am so touched by the kindness and generosity that has been offered to my family by someone who I have never even met. I thank you so much for your thought and prayers and I can't wait to meet you when Kennedy comes home! With deepest appreciation Katie Clayton.

Shawn's Letter.

To Carrie and her whole family.

I'm just in awe of you and yours! What an awesome thing for you to do for us, and I'm not talking about the gifts (which we loved too), I'm talking about the caring words and deep thought that so obviously went into what you've done for us. I have some friends that haven't even called me once during all the events that have occurred with my daughter and to think of what you've done just leaves my jaw on the floor. When I opened those cards from your daughters and parents I just couldn't do anything other then stare blankly with my jaw hanging open. YOU ARE A WONDERFUL PERSON AND MOTHER and if my daughter turns out half as special as yours I will be a happy dad. Thank you so much for all that you've done for us in this time of need. We will never forget you & your families extreme kindness.

Donation Button

2008-07-12T11:25:00.000-07:00

Ok so you may have noticed we added a new page element. On the right hand side of the page is a donate button. It will take you to a paypal donation page. We are really having a hard time keeping up with the cost of gas and the Ronald McDonald house so if you would like to help by sending us a donation we would really appreciate it. Also please pass along the web page to everyone on your email list. Even one dollar will help. Thanks so much!

Some more recent photos

Mommy holding her girl. 7/7/08

Sleepy girl loves her paci. 7/7/08 (nasal cannula)

Here she is with the Hudson prongs. 6/23/08

Home

2008-07-11T06:54:00.000-07:00

7/6/08
It's the little things you miss when your away from home. I miss my bed. I miss being able to sleep next to my husband every night. I miss being able to go to the cabinet and get the nail polish I want. Now I have to call Shawn and try to describe to him the exact color pink I am looking for among a sea of pink polish then wait for him to bring it down on his next trip. I miss having immediate access to all kinds of things like my hair straightener. I dread having to pack all this stuff up again so I make do with out a lot of it. I miss my Kitchen Aid mixer and my food processor and my blender. Don't get me wrong- I'm glad I am able to be down here close to my daughter. I get to spend 8 hours a day with her and I don't have to feel so far away from her when I go back to the apartment at night. The long term housing from the Ronald McDonald house has been a godsend but it doesn't make being away from home any easier. It's been ok till now, but today I am a little down thinking about the road ahead. I was talking with our daytime primary nurse Gail about Kennedy's feeding issues and how long she really thought it was going to be before we could bring her home. She says another 2 months. September- two more months away from home for me if we can afford it, and 4 months after Kennedy was born. When I left my house it was still spring and when I get to go home it will be fall. Crazy. Ok, well enough of my pitty party- How about what you really came for- The news on Kennedy.

Kennedy has been doing pretty well. She is low on her vent settings so she is not requiring too much extra oxygen, only 28 to 35%. (room air is 21%) She has been NPO (no food) for the last few days. She is still having feeding issues so they are trying to get the surgeons to consult on her; they being my primary nurses. Thanks to my primary making a huge fuss they are letting her start on .5cc every three hours (that's almost 8 days before she would bet a full ounce of milk) Its not much but we take what we can get around here.

7/11/08

Today Kennedy is 2 months old. 9 days from now will be her original due date. Well a lot has happened in the last 5 days. Kennedy was doing so well the put her back on a regular nasal cannula last Saturday but yesterday they had to switch her back to the Hudson prongs again since she has been having a rough couple days with her oxygen needs (around 60-70% sometimes as high as 100%). We thought that they were finally going to give into our fighting and have the surgeons do a consult on Kennedy, but they decided to try something new first and put her feeding tube down further. Now instead of being in her stomach it goes past the stomach and into her small intestine. They have her on .5cc/hour continuous feeds to see how she does with it. If that doesn't do it then I don't know whats next. They have to get this girl to eat. She is developing cholestatic jaundice from being on TPN for so long so they are giving her Phenobarbital which is made to treat people who have seizures, but its off-label uses include the treatment of cholestatic jaundice. One big milestone happened on Thursday this week. She moved from her isolette into an open crib. Miss Kennedy is a big girl now and can even be swaddled. One of the nurses taught me how so now I love to wrap her up. She is getting much bigger, but is still so tiny when you try to wrap her in a blanket. As of Tuesday night she weighed about 4 pounds 10 ounces (2100 grams).

Shawn and I would like to thank everyone who continues to help us out. We would especially like to thank my Mom and Dad who have been there for us and helped us with everything from feeding the cats to emotionally and financially helping to support us. Also since I know many of you want to help but aren't sure how, we are in need of grocery gift cards. The only stores I have found so far are Stater Brothers, Food 4 Less, and Costco. Also since it looks like Kennedy is going to be in the hospital for a while longer if you would like to help us to stay at the Ronald McDonald house a little longer you can send check made out to either me and Shawn or directly to the Ronald McDonald house. Its $15 a day and $105/week so even a check for one day would be very helpful.

Thank you again to all of our family and friends for all of your love and support!

Katie & Shawn

2008-07-03T14:34:00.000-07:00

Well I came home for the afternoon and finally had a chance to check my e-mail and update the blog. The last couple days Kennedy has been doing really well the past couple days. So far all her blood cultures have come back negative and she has settled into the Hudson prongs for the CPAP. They are trying some special formula to see if they can digest it better and if she does ok with that then they will put her back on the breast milk. Kennedy was doing so well that last night when Shawn and I went to visit her he was able to just relax and enjoy his daughter for the first time without having to worry about watching monitors and hearing alarms. She was alert and looking around like she could tell what was going on. It was great.

The tube is removed!!!!!

2008-06-30T17:30:00.000-07:00

Kennedy took a huge step forward this week. Thursday they extubated her!!! No more breathing tube in her mouth. She started with a nasal CPAP that has the Hudson prongs, unfortunately for her and us Kennedy did not like this AT ALL. This girl fought like Rocky Balboa for two days straight, no sleep just constant irritation and desaturations of her FIO2 levels. After the two days passed and after several size changes of her nasal prongs they decided to go to a nasal Cannula which is what you see most people who use an oxygen tank wearing, small and semi unobtrusive. After a night of wearing those her CO2 levels were bad so they switched her back to the Hudsons which require Velcro and a stocking cap to stay on her face. She struggled with them but has been doing well as of Monday afternoon. They also have been switching her feeds from continuous feeds via a pump to Bolis feedings which are placed in a syringe and slowly hand squeezed into a feeding tube in her mouth. As of Monday they switched back to the continuous feeds due to a all together good report on her bowels and colon all showing signs of good working order. They were worried about Sepsis again and took several cultures wondering why her platelets are low (she received another blood transfusion) from what we can tell they are just chalking it up to prematurity and the fact that her body is focusing it's fight on the breathing. We were very worried and sad this weekend but she has come out fine and fighting as she has since day one. We will keep everyone updated with any new news as we get it.

Thank you and we appreciate all the support.
Shawn, Katie, and Kennedy.

Update

2008-06-23T11:46:00.000-07:00

It's Monday 6.23.08 and I am home for the first time is 14 days. I had an appointment this morning at 8 so i had to make an early trip up here. I miss my house. I miss my bed. I forgot how soft it is. It's so nice to lay on your own bed after being gone for a while even if it was only for a few minutes. Part of staying at the Ronald McDonald House is having to occupy your room every night. It's not like you have a curfew or anything, but they only have so much space and they need to keep it full or else let another family have it. So my trip home is only for a few hours. I got to see my kitties which I also missed very much but all the cat hair I could do without lol. Since the blog has been so sporadic I will just update you with the latest facts instead of trying to backtrack and keep you up on what happened daily. Kennedy still has pneumonia, she is responding to the antibiotics and has had her ups and downs. She is up to 3 pounds 14 ounces and has moved up to big girl panties (regular preemie sized diapers). She seems so huge looking at her day 1 pic. She is continuing to have problems with her stomach and has been going on and off feeds. As of last night She was getting 1cc/hour continuous with a pump through a gavage tube- still no bottles till she gets extabated. The were trying to wean her ventilator settings but the pneumonia has put that on hold. It really effects her saturation levels and the amount of oxygen she needs.
As for me, I am doing good. Ronald McDonald House has long term housing and has moved me to a duplex where I have a one bedroom apartment. It's much nicer since I have my own kitchen living room and t.v. as well as a bedroom and bathroom. It's in a quiet residential area around the corner from the hospital and is only costing an extra $5/day. Although the people in the big house were friendly and the house was nice there is something about privacy that makes the situation that much more bearable. I can now say that there is now way in H-E-double hockey sticks that I could EVER be on that Big Brother show. Now that I have the apartment I feel like a I have a home to go to rather than just camping out in a hotel style bedroom. I have been spending about 6-7 hours a day at the hospital just sitting with Kennedy. Some time I read to her and sometimes I read my own book. She just finished Charlotte's Web and we are going to start Stuart Little tomorrow. I just finished The Jungle by Upton Sinclair and I am now working on Brave New World by Aldous Huxley. I been helping change diapers and learned lots of new things like how to use the device to suction her mouth out. We have had our ups and our downs but we are hangin in there and hoping for our little girl to come home on or before her due date (July 20th).

For Your Viewing Pleasure

2008-06-23T11:26:00.001-07:00

Daddy Holding his girl for the first time.
6.18.08

Daddy holding his girl for the first time

6.18.08

6.10.08

6.8.08 6.8.08

Musical Hotels, Pneumonia & Father's Day

2008-06-15T18:39:00.000-07:00

It's 6 p.m. Saturday the 14th and we just got back from the hospital. The computer at the Ronald McDonald House (hence forth know as the R.M.H.) has been broken so I am writing this on paper so that Shawn can take it home and post it using our computer.
This week has been an experience. Tuesday the R.M.H. called and said they had a room for us at an overflow hotel, so Tuesday & Wednesday night I stayed there. Thursday they had me move to another hotel. Shawn came down and we both stayed there for Thursday & Friday night. Saturday morning we got the call letting us know that a room had opened at the R.M.H. so we will be here from now until Kennedy is able to come home. It's a nice place with very kind people and they also have Sleep Number beds, so after years of wondering I finally get to find out my "number" LOL.
There has also been some excitement besides the musical hotels experience. As I wrote last weekend Kennedy gave us a scare during an E.T. tube replacement, well this week she decided to up the ante. Thursday was crazy I was holding her and during that time her saturation levels went really low but because her levels were already set at 100% oxygen we had to put her back in her isolete and try some different methods to get her stable but nothing seemed to work. it was at this time that they had to switch her to a high frequency ventilator, called an oscillator. They did lung, urine, and blood cultures and it turned out that she has Pneumonia. A manageable level is in the .oo1 to .003 range, our little girl has a level 9 (not .oo9) which needless to say is a very serious infection! It was rough being here alone and waiting for Shawn to get off work so I could let him know. They started her on some super strong antibiotics. The low point of the week was was Friday afternoon when the nurse practitioner came in to discuss the situation and tell us the course of action. Well she didn't have the most loving bedside manner and I sure could have used a little sugar-coating at that moment because she informed us that there was a possibility our little girl might not make it. To hear a doctor tell you that your child could die is surely the worse experience I have ever faced in my life. I wouldn't wish it on my worst enemy. Needless to say I lost is. I managed to keep it together until we reached the hallway where I pretty much collapsed into Shawn's arms. He had to take me into the restroom and get me to calm down so we could get out to the car and hotel. The good news is that she is doing a lot better. It will probably take a 14 day course of antibiotics before we see the pneumonia bug clear up. So far today (Saturday) she is a lot more alert and active with a much better looking chest x-ray.
Tomorrow (Father's Day) she will be 5 weeks old! It will be Shawn's 1st ever Father's Day.
Here's hoping for all the best.
Well it's Sunday and after typing all this in for Katie I've decided to write a little bit about my first Father's day. I never imagined I could love someone so much. Being a parent is something you just can't prepare for and with the situation we've found ourselves in sometimes I feel I'm in over my head. But that feeling never lasts long because Katie, Kennedy and I are going to come out of this stronger and with a different concept of family then most people ever get to experience. When we arrived at her room today Katie surprised me with a card from Kennedy that had her hand prints in it. I Loved it SOOOOOO much. Katie is such a great wife. It was hard today because they were doing some procedures, and I always have a hard time watching cause I am a big softy. But our Nurse Practitioner came in and said that things were much better and that the antibiotics have started working. Her oscillator settings were down very low and Gail our nurse was saying she was getting back to her feisty self. After I had left and driven home Katie called with great news, they put her back on the other ventilator because she didn't need the high powered one anymore. This means her lungs are working better and she is doing more of the breathing work herself. There is a minor thing with her stomach acting up again, but with preemies you take small steps forward and try not to let the setbacks phase you. I LOVE my daughter so much I could cry, and I probably will. As for now though I am smiling!

Ronald McDonald House

2008-06-10T10:20:00.000-07:00

Last night the Ronald McDonald house called around 7:30ish as we were on our way to the hospital. They had a room available in a motel where they have over flow stay until a room opens at the house so that's where I stayed last night. Right now I am back at my house packing bags and getting ready to head back down. They have one computer with Internet access at the house, but since I am currently staying at the hotel I am not sure how often I will be able to access it so the blog may be a little slow for I bit and lacking in pictures but I will try my best to keep everyone updated with all the most current info.

4 weeks and a scare

2008-06-09T14:50:00.000-07:00

Well yesterday Kennedy was 4 weeks old and she gave us a bit of a scare. Around 11am we were packing stuff up and getting ready to head down to the hospital when the phone rang. Shawn answered. I could tell it was someone from the hospital. As the phone call went on- longer then the usual call confirming an appointment or asking how we are doing- I watched him. All he was saying was a lot of "uh has" and "oks". I watched his face trying to figure out who he was talking with and if everything was ok. I could tell this was one of those phone calls I had been dreading. When he hung up the phone I tried to hold back tears knowing that something wasn't right. He told me everything was ok, but he wanted me to sit down. I started sobbing. The day before her saturation levels were low so yesterday morning they decided to replace her E.T. tube (breathing tube) with a larger one. This is something normal that happens between the weights of 1100 and 1300 grams. While they were trying to place the new tube she clamped down and they couldn't get it in place right away. During all this her heart rate dropped into the mid 80's (usually around 150) and they had to do chest compressions. They stabilised her and they gave her morphine to help relax her and so she could rest. He told me all of this, but I didn't hear it, or maybe I just didn't want to hear it, but he would end up going over it with me three or four times before I could take it all in at the end of the day. We immediately got in the car and Shawn drove us down to the hospital faster than I had ever seen anyone drive in my life. The whole time I was crying, but trying to calm myself down- even though she was ok I just couldn't take it all in.

We got to the hospital and stayed with her for a few hours, but after I saw she was ok the physical exhaustion from the scare set in and I was just so tired I could barely keep my eyes open. Yesterday was supposed to be the first time that Shawn was going to hold Kennedy, but we all thought it best not to attempt it. She had been through so much and needed to rest. Her saturation levels were stable while we were there and when I called later that night they had remained stable. This morning when I called her primary nurse was back on duty which makes Shawn and I both feel so much better. Kennedy's oxygen levels were a little high, but her saturation remained stable and she was doing well. She is off feedings for the moment, but they hope to start her back soon. Her weight is up to 1345 grams which is right about 2 pounds 15 ounces- more than double her birth weight and 13.25 inches long. :0)

Today I am waiting to hear from the Ronald McDonald House to see if they have a room available for us. It is right across the street from the hospital and it would make it possible for me to spend most of my day and night at the hospital with Kennedy. When I spoke to them this morning they said that there was a waiting list and that they have to wait for people to check out and they families are chosen by distance from the hospital and diagnosis. Form the way it sounded I wont be going there today and possibly not for a while, but I am glad I am at least in line for a room since it it likely that Kennedy will be in the hospital at least till the end of July.

Hopefully today Shawn will be able to hold Kennedy and we can get some new pictures up.

I changed my first diaper!!

2008-06-05T15:29:00.000-07:00

I changed my first diaper!! No really- the first ever.
Last night I got to change my first ever diaper and it was on my daughter. Shawn got it on camera so I will include the video. I also helped with the bath so that next time I can do it on my own. Its just a sponge bath for now, but once she no longer has an IV and all her wires hooked up then she gets a full on tub bath. So yeah it was nice to be able to do some more mommy type things. She also got her milk increased to 1cc/hour and her weight was up to 1140grams or 2 pounds 8 ounces.

Ok- the video upload is being dumb- so check back later to see if its up :0)

Also before I go- I know people want to help, but might be unsure of what they can do so if your one of those people what we really have a need for right now is gas gift cards. With gas being $4.32 currently we could really use some help in that area. Even if it's just a $5 card it would help tremendously.

Thanks everyone!

3 weeks

2008-06-03T11:50:00.000-07:00

Sunday marked Kennedy's 3 week birthday. We took rice krispy treats in for the nurses and also brought in the bear from the flower arrangement Dan and Elizabeth sent. We can't leave stuffed animals in the issolette, so we just brought it in for pictures so she can see how small she was compared to the bear when she grows up. She has been doing really well. First let me correct myself- I thought she was getting 1 cc of breast milk and it was actually .2 cc, but she got upped to .5 cc as of yesterday. They are also turning down her ventilator setting and trying to wean her from it so they can switch her over to a CPAP that will still give her the positive air pressure to help keep her airways open, but is a step closer to being able to breath on her own without any equipment. This will be fantastic because they can remove the breathing tube from her mouth and switch to a nasal cannula and we might actually get to see her whole face including that elusive top lip that is always covered with tape. She has been as fussy and feisty as ever and has been opening her eyes a lot but Daddy and I are still trying to see what color they are. She has also started to use a pacifier. Its preemie size, but it is still huge next to her. Gail , our primary nurse, decided to give it a try after Kennedy kept sucking loudly on her breathing tube during one of our kangarooing sessions. She loves it. As of yesterday She weighed 1100 grams which is a little over 2 pounds 7 ounces ( a full pound over her birth weight!) and she measured 14 inches long. Oh yes and her diaper fits now!

Kennedy compared to the bear

Kangaroo time

Kennedy is getting bigger!

It's about time!!!

2008-05-30T09:23:00.000-07:00

Yesterday Shawn and I went down late to try out the new schedule. He is switching to 10 hour work days four days a week next week so we will have to wait until 8pm to go down to visit after evening shift change. I hated having to wait to long to see my baby girl, but it was all worth it once we got down there. THEY ARE GIVING HER BREAST MILK!!!!! YAY! They started her on 1 cc of breast milk every hour to see how she does. She is still getting her TPN to make sure she gets all the nutrients that she needs but if she does well then they can increase the amount of breast milk and hopefully get her off the TPN soon. The breast milk thing is extra good news because it means 1) the gas in her belly has gone down enough they feel safe feeding her and 2) hopefully she will start gaining weight even better. As of last night she was 1030 grams which is just over 2 pounds 4 ounces which is super fantastic! I am so excited about the whole thing. The only thing that I was a little disappointed with was that when we saw the nurse refill the syringe with milk it was my real milk and not my colostrum. I said something to the night nurse and she said the day nurse must have grabbed the fist bottle they saw, but she would make a note about it and just to be sure I called the day nurse this morning just to make sure she was aware to use it first. Other than that is was a fabulous night all around!

Thank you!

2008-05-28T19:45:00.000-07:00

Just a quick note- I want to say thank you to everyone who has been helping out! We have been crazy busy and I haven't had a chance to call and thank everyone personally, but some people have sent checks to help out with the gas costs and I want to make sure that you know we really appreciate it! Money is super tight and driving the hill everyday is very expensive- especially with gas over $4 a gallon. The checks are really helping us right now and I am sorry that I haven't been able to personally thank you, but we are very grateful for the help. Also I was to say a very special thank you to my sister Christi who came out for a week to help me out and drive me around since I still can't drive because of the c-section. She was absolutely wonderful. She even got Kennedy's dresser painted and it looks awesome! I hope to get some pics up soon.
So to everyone- Thank you! Thank you! Thank you!

HAPPY TWO WEEKS OLD!

2008-05-25T20:55:00.000-07:00

Well today is Sunday which means that Kennedy is another week older and 1 week closed to being home. She has done really well this week and made lots of progress. As of today's visit she weighs 1 pound 13 ounces (7 ounces more than when she was born) and measures 13 inches long (.75 inches more than when she was born). She has taken to kangarooing very well and I have been able to hold her everyday since Friday. Daddy is still a little too nervous to hold her just yet, but hopefully she and I will be able to talk him into it soon. They are talking starting her on some breast milk on Tuesday and seeing how she does. Today we went through all the clothing gifts we have received and we are all set for everything from newborn size thru 9 months and also we have gotten quite a few nice blankets so if anyone was to get her a gift we are are all set on clothing but we could use a pack of receiving blankets or some some of the things off the registry. I will try and have it updated by wednesday with all the essential items we are still missing. Also she really like it when I sing or tell her stories so today we got her "Where the Wild Things Are" and "Corduroy"-Two of my childhood favorite books so if you want to get a her a gift a book would be much apprecatied so I can have new things to read to her. Also as some of you are away we cancelled my baby shower that was supposed to be on Saturday, but we hope to have a big Welcome home party when she is released from the hospital.

Here are some pics from the last couple days:

Uncle Mike meets Kennedy

Kennedy Loves to Kangaroo

Pretty Girl

Daddy holding Kennedy's Hand

The flowers Dan and Elizabeth sent- oh so pretty!

Kennedy's Two Weeks Old Picture

2008-05-23T07:37:00.001-07:00

Well, I didn't get to hold Kennedy last night. They had her breathing tube down too far and she wasn't oxygenating well so they had to fix it and she was a little stressed from it so we pretty much left her alone and just watched her and talked to her. Also they did a culture on the secretions from her throat and said that there were some "organisms growing in her lungs" This kind of freaked me out and also made me thing of the movie Alien a little bit, but basically what it means is she may have an small infection and that they are going to start her on antibiotics to be safe. Once the more resutlts are back it may show it was nothing and they can take her off the antibiotics. Now I don't want anyone to get worried because that nurse practitioner said that it it completely normal for this to happen. Because she has a breathing tube in it kind of acts as a highway for bacteria to go to her lungs which is why they try to get the babies off the ventilator as soon as possible, but since she is so little they want to be extra carefull about taking it out. They are not concerned and said we can still touch her and even hold her if we like so if it was serious they would have made her more off limits than that. Other then those two things she is doing very well and gained more weight. She is back up to 800 grams so a little over 1 pound 12 ounces.

The best day ever!

2008-05-22T08:10:00.001-07:00

Tuesday we had a good visit. Even though Kennedy lost two ounces she was doing really well and had finally pooped again. My sister Christi came out from Arizona to help out and she drove Shawn and I down to the hospital and also got to meet her niece for the first time.

Yesterday, Wednesday, Shawn and I went down a little early and we got to talk with the nurse practitioner on duty for Kennedy. She said everything was looking great! Kennedy has been pooping like crazy and that the delay was probably just because she was so small and premature, but now her system seems to be catching up. The barium moved to the same point in one day as it took a whole week to move with the last enema so that's pretty fantastic. The gas in her belly is almost gone except for two large pockets they are still watching, but it only warrants an x-ray every 24 hours now. That's a good thing to not have my poor child exposed to so much radiation. Her blood sugars are stable, the valve in her heart closed up like it was supposed to, and they did an ultrasound on her head and couldn't see any brain bleeds which she says usually show up by now. Also Kennedy gained an ounce back so she is 1pound 11 ounces again. All of it was really good news but did it make it the best day ever? Nope! This did:

THAT'S RIGHT!!! Ten days after my daughter was born I finally got to hold her! OH it was the BEST experience so far. She was so soft and warm. I kissed her head at least 5 times. She was a little bit squirmy which was cool because I could really feel how strong she is and she opened her eyes really big and was trying to see stuff. I cried. We forgot our camera yesterday so the nurse managed to find one and print these pictures out for us. To be able to hold my daughter it was completely indescribable-- the feelings I had were so amazing. I can't wait to go back today to hold her again. The nurse said she was taking well to the kangarooing. Oh yeah and they said they were going to start her on the breast milk sometime next week :0) A totally awesome, amazing, wonderful day.

New Pix

2008-05-22T07:59:00.000-07:00

Kennedy loves holding her ear

Aunt Christi meets Kennedy

Kennedy 6 days old

Jenn's visit with her pixie

2 visits in one day :0)

2008-05-19T20:52:00.000-07:00

Today 1 got to see Kennedy twice. My mom took me down this morning to get my staples out. The doctor went over the pathology report for my placenta with me and got a little more in depth this time. He called it plactenal insufficiency and said I need to remember it in case I get pregnant again. He said there is a good chance the same thing would happen and I would have to be monitored very closely, but honestly right now I can't see myself ever trying for another baby. When Kennedy is home safe I will be completely happy with my one miracle baby. I can imagine having to go through this ever again. Maybe a few years down the road I might change my mind, but right now there is no way. He said my placenta was prematurely aged and that parts looked like 32 weeks and parts looked 37 weeks and some parts were already dead. When I asked him about the rash I developed the day after I came home he told me it was PUPPS which he found very interesting because that is something unique to the very end of pregnancy. He said it looked like my whole body thought it was time for my pregnancy to be over even though I was only 30 weeks when I delivered.

After they took the staples out my mom and I went up to NICU and she got to meet Kennedy for the first time. She couldn't get over how tiny she is. The second visit with just me and Shawn was a little harder. Shawn has been my pillar of strength since the Friday the ultrasound came back as abnormal and our drama began. He has been there for me constantly, he has comforted me, held me and told me everything will be ok, but today it was my turn to be strong. He had a hard day while we were there and is still having a hard time. The reality of the situation starts to bare down on you and the stress gets to be too much and he hasn't had a chance to have a breakdown yet. It's hard for me to see him hurt this way. I wish I could take it all away. I wish I could make our daughter better so she didn't have to go through all this and he didn't have to see her go through it.

Kennedy's daily report was good. She is up to 799grams which is just over 1 pound 12 ounces. The decided not to go an upper GI with barium and are going to do another barium enima tomorrow. He blood sugar is still under control and she is still on a low level of oxygen. The nurse said I might be able to hold her in the next couple of days.

Good News All Around!

2008-05-19T06:53:00.000-07:00

Sorry I haven't posted anything new in a couple days. Making the drive to Loma Linda, keeping up with pumping and trying to get some rest in between has been harder than I thought. I have overdone it the last couple days and I am feeling it. Today I go to get my staples out so I am going to have to be extra careful. Thank goodness my sister will be here tomorrow. In case anyone hasn't heard we are going forward with the baby shower as planned for this weekend so I look forward to seeing everyone there and I have lots of pictures of Kennedy to share!

Ok so here is the news on our darling little girl- Saturday Shawn, Dan (Shawn's Dad) and I went down and had a great visit with Kennedy. She was doing so well. She had gained again bringing her to 1 pound 10.5 ounces so that always makes mommy and daddy happy :0) Dave and Jenn came down as well and got to meet her for the first time. Jenn is Miss Super photographer and took a bunch of great pictures which I got to see last night. While looking through them I stopped at this one and started crying.

It's my daughter and she is so incredibly beautiful. I look at this and can feel close to her even when I am an hours drive away. I can't thank Jenn enough for this. She has no idea how much it means to me. Don't worry grandmas and grandpas The prints are ordered and will be on their way to you shortly.

Yesterday was also an awesome visit. She was one week old. She gained another ounce and is up to 1 pound 11.5ounces. It makes me feel like she will hit the two pound mark in no time. Her blood sugar is under control, she hasn't had to have any transfusions or platelets in two days and her gases in her belly are looking good. They also put in a PICC which I am told will last longer than a standard IV and means they are taking one of the tubes out of her bellybutton. Today they are going to give her barium from above (her mouth) to get a better idea of whats going on in her intestines with the gases and why she isn't pooping much. But overall she is doing well. Hopefully by the end of the week I might get to hold her. I used to be scared to hold newborn babies. I thought babies that weighed 8 pounds were going to break and I wouldn't get near them, but now I would give anything to hold my tiny daughter, to hear her cry in the middle of the night and change even the worst of the poopy diapers.

Nakie Butt Girl

2008-05-17T09:28:00.000-07:00

Yesterday we had a fantastic visit with little Miss Kennedy. In the afternoon Shawn, his mom, and myself all drove down to the hospital together and we met Shawn's dad there. He drove form Carpenteria to stay for the weekend and meet his granddaughter. We all went upstairs and while Shawn took his mom in I went in a room to pump. I was only in their for a little bit when Shawn's mom came in and told me that visiting hours were over at 6:30pm. Well we thought we could be there anytime that they weren't doing shift change or rounds, so I freaked. I took apart the pump as fast as I could and ran back to do the 3 minute hand wash so that I might be able to spend at least a minute or two with my baby. The nurse was super nice and said we could stay for a few, but visiting opened back up at 8 after the shift change. Well I was relived cuz I wasn't about to go anywhere without seeing my daughter. I had waited all day and they were going to have to drag me out. After a few minutes Shawn and I left and all of us went to dinner at BJ's Brewery to kill time until we could go back. It was really nice. Just the four of us enjoying a meal and talking. It was a good change of pace for me. A good break from all the stress. When we got back to the hospital Shawn took his dad in and afterwards I went in with his mom.

Kennedy was doing well and was naked as a jay bird. No hat, no eye covers, even her diaper was open. The nurse says she loves being naked. I can't wait to see her little nakie butt running down the hall after a bath. They turned off the lights for the jaundice so she is not a little glow worm anymore. Her oxygen is on a low setting, her blood sugar is stable, and she gained an ounce! She weighs 1 pound 9 ounces now. (700grams) She is our little micro-preemie. A thumbelina. I sang our song to her (Baby Mine from Dumbo) and she was trying so hard to open her eyes. I left the visit for the first time feeling relief and joy about our daughters progress instead of stress and fear. It was an especially nice feeling after such a rough day on Thursday when I had to leave her at the hospital after discharge. I can't wait to go visit her today. I'm hoping to hear some good news about the air in her belly. Hopefully she will have taken a big poo and they will have started to dissipate so they don't have to do x-rays every 8 hours. We did get some pictures yesterday, but they came out a little dark, so once we play with them a little bit to brighten them up we will try and get them up so everyone can see her little face.

Pictures form day 1 and 3

2008-05-16T07:56:00.000-07:00

And so it begins...

2008-05-16T07:18:00.000-07:00

May 11, 2008 our baby Kennedy was born by c-section 10 weeks early. She was born at 4:52pm weighing 1 pound 6 ounces and measured 12 ¼ inches long. We have created this blog to help keep family and friends updated on her condition.
So I guess I will start with the events leading up to her birth. The following is copied form my journal:

5/11/08
It’s 4:20am Sunday morning- Mother’s Day- and I am writing this in the dark on the back of a scrap of paper with only the glow of Nick@Nite to see by. I am at Loma Linda Hospital. Shawn is Asleep in an empty patient bed next to me. This past night was the first sleep we have had in 40 hours. The nurse woke me up at 2:30am to get my vitals and monitor the baby’s heartbeat. Since then I haven’t been able to fall back asleep. All I can do is wait for the news and pray that today isn’t my first mother’s day as a real mom.
So I guess a little background is in order, so let me catch you up. Friday afternoon at 3:45 Shawn and I went in for a routine ultrasound. The tech was very nice and told us not to worry, but she wanted to call out doctor because the amniotic fluid was too low to measure and Kennedy was measuring only 25 weeks- a full 4 weeks behind my actual 29 week date. The tech called my doctor’s office and they told her to send me to Labor and Delivery. Shawn and I went over to Saint Mary’s thinking we would be in for a few hours of tests and be sent home. Boy were we wrong. They immediately admitted me and placed me in the L&D triage unit. My blood was taken and another ultrasound was done. My doctor had just left town and the doctor covering for him was busy at another hospital so they had to wait for another doctor to come to review the ultrasound. The whole time we were waiting I tried to be as upbeat as possible and Shawn and I hung out and watched tv. When the doctor they got came to see me he told me in a very calm manner that they didn’t have the proper equipment or personnel to accurately diagnose me and that even though everything would probably be fine he was going to transfer me to Loma Linda University Hospital. He told us they were the best place to be for this sort of thing. “This sort of thing” being a high risk pregnancy situation- but I didn’t realize that was what he meant at the time. The nurse said I would have to go by ambulance so Shawn and I decided that he would get some things from home and drive down there with my mom and meet me there. Two and a half hours later the ambulance arrived to pick me up so I called Shawn and he and my mom left. It was my first ambulance ride ever. They were very nice and I was able to get about a half hour of sleep on the ride down. We got to Loma Linda at about 11:30pm and I was put in a room in Labor and Delivery. The resident on duty came and did another ultrasound and decided to admit me. The nurse brought up the paperwork and after I signed all that they sent in a nurse practitioner from the NICU. She talked with us about the potential problems that our baby might face if it was born at 29 weeks. Up to that point I had done a pretty good job of staying calm. I have seen enough baby shows to know that at 30 weeks a baby has a pretty good survival rate if born early and that they could at least give me steroids to help her lungs, but when the NICU nurse was going over everything it was so overwhelming. Even Shawn, by his own words, “almost lost it.” It was 3:30am before all was said and done and we could try to get some rest. Mom went to the waiting room and slept on the floor and Shawn stayed in the room with me and slept in a chair. Really though non of us got more that 45 minutes of sleep. The nurse gave me a shot of steroids for the baby’s lungs. At that point it was no longer a matter of if my baby is born premature but when, and I could say goodbye to the vaginal delivery that I had hoped for. Dr. Skala (the perinatologist) came for rounds with the residents on the high-risk team. They sent a tech to do a formal ultrasound. It took about an hour and he took way more shots than a normal ultrasound. It was about 10am when he was finished and they transferred me to the anti-partum unit where they keep the women waiting to go into labor. Then our entire Saturday was mostly waiting. We have to wait for the radiologist to review the ultrasound and state his findings. We were waiting all day yesterday. They are tracking the baby’s heart rate every 6 hours and have me on an IV. Dad came to visit and take mom home around 6pm. Shawn refused to leave me until we hear back on the ultrasound. Finally at 7pm they said I could go have dinner in the cafeteria, but I would be back to no food after that. It was the fist I had eaten in 30 hours. We were back in the room by 8pm and decided to try and rest why we waited for the results which brings me to this morning. It is now 5:30 Sunday morning. I got another steroid shot for the baby’s lungs. I was told the residents would do rounds about 7 and hopefully by 8 or 9 the doctor would be in to discuss the plan of attack. Basically we need to know why the fluid is low and if Kennedy’s lungs and kidneys are working. Her heartbeat has been good the whole time. We are of course hoping for the best, but I fear the worst. I realize that no matter what my baby will be born early. I hate the thought of her being poked and proded and having tubes everywhere. She was only measuring 1 pound 3 ounces by Saint Mary’s estimate. It’s just so tiny. 30 weeks is ok for a premature baby, but the fact that she is measuring only 25-26 weeks is what has me worried. I am so scared. I’m scared to have a c-section, I’m scared she won’t cry when they take her out, but most of all I’m scared she wont make it. It’s hard to explain how you can have such strong feelings for this little person inside you who you have never met. I love her so much. I have been looking forward to being her mom, but please God just not today. Give her a little while longer to grow inside of me- to get stronger and healthier.

5/11/08 10:30am Ok well, so much for extra time. I am having the c-section today. In as little as 4 ½ hours I will be having my baby delivered. They think the placenta is causing the blood flow from the baby to be interrupted. They tell me she should weigh about 2 pounds. It is very overwhelming right now. Shawn left to go home to pick up some stuff do he can be back by 3. I got a shower so at least I feel semi-normal again. Now its just waiting.