Wednesday, December 31, 2008

Rolled over

Raegan rolled over 5 times yesterday, it was a great sight to see. I hope that rolling over is a start to bigger things to come. When I get a chance I will post the video I took yesterday of her rolling over.

Also I want to wish every one a Happy and Safe NEW YEAR.......

Friday, December 26, 2008

Mommy & Daddy's Igloo

Snow in Vancouver

With the help of a couple of friends we built this igloo tonight

Aaron & Billy

Aaron, Cali, & I

Me, Peter, & Mark

Christmas Pictures

Christmas Day, and a new hat from Great Grandma & Grandpa

Raegan & Jett on Christmas day

Raegan & Santa

Raegan & Grandma

Raegan & Kennedy

Thursday, December 25, 2008

Merry Christmas

Raegans 1st Christmas was a good one. It even snowed on her first Christmas. Thank you everyone for the great gifts and the Christmas wish's. I hope everyone had a good Christmas.

Monday, December 22, 2008

Nutter Butter Balls

Since I was snowed in today I thought I would make these and they turned out great, and they also taste really good.

Start by finely chopping the cookies…

Combine with cream cheese and peanut butter and roll into balls…

And dip in chocolate… easy!

Nutter Butter Balls

1 pkg. Nutter Butter cookies (broken… use cookie with the cream center)
1 8oz. package cream cheese (softened)
1/4 cup peanut butter
chocolate bark

1. Finely crush all but 5 cookies in a food processor or place them in a ziploc bag and crush into a fine consistency.
2. Combine with cream cheese. Use the back of a large spoon to help mash the two together.
3. Roll the mixture into 1" balls and place on wax paper covered cookie sheet.
4. Melt chocolate as directed on the package and then dip balls into chocolate, tap off extra and set aside on wax paper covered cookie sheet to dry.
5. Once dry, refrigerate and enjoy!

Makes about 30 balls.

Dr. Mary

Happy Birthday Dr. Mary!!!!!

Sunday, December 21, 2008

Snowed In

It has been snowing for days and it doesn't look like it is going to stop any time soon. Since it has been so cold, and I am sure most people haven't been able to get out and finish their Christmas shopping I thought that this would be a great idea. Coco and hand dipped candy canes. A perfect gift for these cold days.

Saturday, December 20, 2008


1st lair

2nd lair

3rd lair

Raegan all bundled up and out in the snow

Raegan opened her eyes and was blowing the snow away

Friday, December 19, 2008

Growth Charts


Raegan had a doctors appointment today and she weighs 8lbs, and is 19.5in long. It is exciting that in two weeks Raegan put on 8oz. Last month she only put on 8oz. I am hoping that this month she will put on a pound. My goal for her is to be 8lbs 8oz on January 5th when we go see the pediatrician for Raegan's 6 month check up. Wait I can't believe she is almost 6 months old. Boy how time flys when your not in the NICU.

Today was a very good day we got to see Doctor Mary, Laura, and Mitzi. Oh and we got to meet Dr. Marys dad Dr. Rogers. Today's doctors appointment was a NICU follow up just to see how Raegan is doing as far as meeting milestones. Raegan is ahead of where she should be for most things. The only thing that she needs to work on is being more vocal. Raegan is vocal, but not in the right way. As I shall put it more talking less yelling. We also had them print out Raegan's Grow chart to see how she is doing, she way off the chart. I will go scan them and post them here so everyone can see. Just so everyone knows I have no complaints about Raegan being small. We get good use out of things, and that right there should make any parent happy.

I hope everyone is doing well, and having fun in the snow (if you have snow). Stay warm and have a great weekend.

Monday, December 15, 2008


Oh my is it cold... 21* outside, but I am sure for those of you who live in the Portland/Vancouver area you are aware of this. So the reason for this post isn't for everyone that is reading it now, but it is for Raegan. For those of you who don't know already I am going to take all of my blog posts and turn them into a book to give to Raegan. Some people scrapbook, but I just can't get in to that, so I am blogging. When I started blogging I knew it would be for Raegan, but it has also become a great way for people who don't see Raegan very often to keep up dated on how she is doing.

Any how, I just wanted to tell Raegan that yesterday was her first snow. It was really cold outside, so we just watched it snow from the window. Mommy was waiting for it to snow more before I bundle you up to take you outside to see the snow. Yesterday there was just a light dusting of snow, not enough to cover the ground. Watching the news, all the towns around us had snow, but not here in Vancouver. I am watching the news now, and lets hope the news man is right and we get snow later this week. Not that you can play outside in it, but Mommy and Daddy want to build you a snowman.

Wednesday, December 10, 2008

Black Dog Photography

So after a long day yesterday, our business has a new website. I posted the website under the links, just look to the left and you will see it. Let me know what you think.

Christmas Pictures

Sunday, December 7, 2008


I am almost afraid to say it, if I do will it stop happening? I guess I will just say it for the last 4 days Raegan has slept through the night! She eats around 6:30p-7:00p then she will take a nap till about 10:00-10:30, then she eats again and goes to bed. She will then sleep for 6-10 hours getting up between 6:00a-9:00a. It has been really nice. The only thing we worry about is that if she doesn't get up in the middle of the night is she getting enough calories. We went to see Dr. Vaughn on Friday and she said that Raegan needs to eat at least 13oz a day to get enough calories. I will do the math for you 1oz = 25 calories, 13oz = 325 calories. I am hoping that we can keep her eating the much and maybe get her to eat more. Raegan has always had a hard time with feeding, but with the help of the doctors we are figuring out the issues and working on them. Our goal is to get Raegan gaining 1-2 pounds a month. This last month Raegan only gained 8.5oz and she did not gain any length staying at 19in.

On Thursday at the mom's group I go to at Legacy Salmon Creek the guest speaker talked about car seat safety. We talked about how long a baby should be rear facing and most people think 20lbs or 1 year. I asked if they can sit rear facing for longer than that, because Raegan might be 2 or 3 years old before she hits 20 pounds. The lady said that baby's can sit rear facing up to 35 pounds. The other thing we talked about was booster seats and how long a child should use one. Again most people think 100 pounds or 8 years of age. They lady said that you need to be at least 4'9" to not have to sit in a booster seat. I said well if it is 100 pounds or 4'9" then Raegan might be going to get her drivers license and still in a booster. Everyone in the room laughed.

When people talk about their child growing out of things, I always joke about how long it will take Raegan to grow out of things. When people talk about how they hope they get their moneys worth when they buy something. We get our moneys worth and some. There are nice things about having a child that grows really slow. I am always finding a way to make a not so great situation a positive situation.

So I will leave you with a great idea I just though of while typing. I am going to start walking around with penny's in my pocket, and every time some one stops to ask me how Raegan is or if they comment on how small she is for her age, I will move a penny to the other pocket and when I get home I will put the penny's in a jar. Then when Raegan gets older she can see how much attention she got, and she may just be rich! So with that thought have a great day.

Thursday, December 4, 2008

Tuesday, December 2, 2008

Johnson Family

2008 Johnson Family Thanksgiving

Monday, December 1, 2008

Big weekend

Raegan sticking her tongue out.

Dr. Rocco showed Raegan how to stick her tongue out when she was still in the NICU. She now smiles when she does it.
Thank you Rocco =)

Raegan has had a big weekend!!! She has found her hand and now sucks on her hand and thumb. It is very cute to watch. I also spent 4 hours this weekend doing laundry and hanging clothes up.... why you ask.... Raegan has grown out of preemie clothes and is now in newborn. Newborn is still a little big for her, but we make due by rolling the pants and sleeves.

Today Raegan got her first shower and loved it. She just watched the water come down from the shower head, and she kicked her feet as the water fell on her. It was very cute. I think Raegan is going to be like her daddy... spend as long as they can in the shower/bath!!!

Thursday, November 27, 2008

Happy Thanksgiving

I just wanted to say Happy Thanksgiving to everyone. I know that I have a lot to be thankful for this year.

Wednesday, November 26, 2008

Oh so busy

Playing in the bathtub

I can't believe it is Thanksgiving tomorrow, this month has gone by so fast. Before I forget, I hope every one has a great Thanksgiving tomorrow. We are going to my parents house tomorrow, I can't wait to eat some yummy food. Thanksgiving is one of my favorite holidays. I can never get enough turkey and pumpkin pie.... oh wait and eggnog. Speaking of eggnog, for all of you eggnog lovers you should try an eggnog latte at Starbucks, they are really good. So Raegan has been home just over a month and nothing major has happened which is great. These days no news is always good news. Alright here is the run down on what has gone on this last month. Raegan came home on the 22nd of October. We took back Raegans apnea monitor when we got home because she no longer needed it. Raegan did have to come home on a new medication- Zantac which helps her to not spit-up so much. Raegan did have to go to the doctors on November 7th to get medication for a very minor case of thrush. Thrush is an infection in the mouth that you can get from being on antibiotics for a long period of time. So after a few days on the medication the infection was gone. Lets see what else....

Well I think I will just make a list of things about Raegan:
  • Her weight is up to 7lbs 5oz
  • Her length is 18 7/8 inches
  • She is still in preemie clothes, but wearing some newborn clothes even though most of them are way to big for her.
  • She is smiling a lot more
  • A few nights she has slept 8 hours!!!!!
  • The Dogs seem to like Raegan...
  • Raegan could careless about the dogs at this point, but when she is older I know that she will like the doggies.
  • She enjoys taking a bath
  • Raegan loves to go shopping (she sleeps the whole time).
Thats all I can think of for now. The new news for today is we went to go meet with a feeding team at Legacy Emanual Children's Hospital. I sat in front of about 8 people and they asked me questions about Raegan, looked over her and then they watched me feed her. Feeding has always been an issue for Raegan. They noticed that she doesn't pull her tongue out as far as she should while she is eating causing her to not have a very good suck. We also talked about Raegan's weight gain, or lack there of. They gave me a new mix combination for the breast milk and neosure powder to increase it to 25 calories per ounce. I am hoping that this will help Raegan is gain weight a little faster. The doctors told me that they would like to see her gaining between one and two pounds a month. We will meet with the feeding team again in January so they can see if Raegan has made any progress.

Keeping up with the different doctors and Raegans doctors appointments has become a full time job in itself. I am hoping after we get through this first year the doctors appointments will slow down, and I am sure they will.

For now things are going great and we are happy to have Raegan at home, and for all the NICU staff that read this, we miss you guys.

Sunday, November 16, 2008

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

Being a mom to a micro-preemie hard. It’s challenging, and stressful and overwhelming at times. I have been lucky enough to find a great online support group at Preemie Blog Moms. It’s a place where I can go to chat with other parents who face the unique challenges of raising a micro-preemie. All to often it becomes a place for us to vent about our frustrations so I thought why not turn things around and make a list of things I like about being a micro-preemie mom.

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

1. While we were in the NICU I got to do a lot of Raegan’s care. Since she was in there for 105 days it gave us plenty of time to learn how to take care of her and what was normal and what was not. 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 Raegan home if she was full term then I was taking her home from the NICU.

2. 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 possibly happen to me, and there is nothing wrong with that. I did the same thing before Raegan, but shortly after her birth I noticed that I looked at people differently. I no longer looked at a child who was bald and hooked to IVs and thought poor sick kid has cancer. I 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.

3. Relationships- I had no idea how many people love and care for us until Raegan 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.

4. 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.

5. 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 Raegan 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.

6. The best part of being mom to my mircro-preemie- Raegan. 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 Raegan the person that she is today and I love who that person is. I wouldn’t change it for the world.

Wednesday, November 5, 2008

Sunday, November 2, 2008


I am very happy we have been home for over a week and I don't see any signs that we will have to go back to the hospital any time soon. It has been tough adjusting to having Raegan home. I get up with Raegan Sunday-Thursday nights and Aaron gets up with her on Friday and Saturday night. I am still trying to figure out how to get sleep, make Raegan happy and get chores done around the house. I haven't really figured out Raegans sleep schedule, except for the fact she will sleep good one day and not the next. I am sure that as she gets older things will get better.

Friday night we took Raegan to the neighbors houses to go trick or treating. Not all of are neighbors had seen Raegan so is was nice for them to get to see her. A few of them offered to babysit if we ever need a sitter. I thought that was very nice of them.

Well Raegan is starting to wake up so I have to get going, but before I do here is a picture of Raegan in her costume.

Wednesday, October 29, 2008

Friday, October 24, 2008

Wednesday, October 22, 2008

Raegan came home

Raegan got to come home today. I am hoping we can make it past her 1st birthday before we have to go back to the hospital. Well we are off to the pumpkin patch while the weather is still nice.

Friday, October 17, 2008

Stephanie the resident

Raegan and Stephanie
Raegan wanted to show off her costume a little early.

Thursday, October 16, 2008

Surgery went great

The surgery went great. The doctors came out about an hour after surgery and said Raegan did great and she is back in the NICU recovering. The neurosurgeon said that Raegan might be able to come on Saturday. She just needs another 48 hours of antibiotics. I am really excited, I can't wait to have her home again. I will post some pictures from this surgery later.


I am always using abbreviations when I am posting a blog, and I am not sure if I have explained what they all stand for, so I thought I would start a list:
  • NICU - Neonatal intensive care unit
  • ROP- Retinopathy of prematurity
  • CPAP - Continuous positive air pressure - A nasal CPAP device consists of a large tube with tiny prongs that fit into the baby's nose, which is hooked to a machine that provides oxygenated air into the baby's air passages and lungs. The pressure from the CPAP machine helps keep a preemie's lungs open so he or she can breathe. However, the machine does not provide breaths for the baby, so the baby breathes on his or her own.
  • Apena- spell where baby stops breathing
  • Brady - Bradycardia, when the heart rate drops low
  • As & Bs - Apnea and bradys
  • HMF - Human milk fortifier - added to breast milk to increase calories as premies need more calories to gain weight
  • IUGR - Intrauterine growth restriction - because of conditions in the uterus or problems with the placenta the baby fails to grow at at normal weight
  • O2 - Oxygen
  • NG tube - Nasogastric tube (feeding tube through the nose)
  • TPN - Total Parenteral Nutrition - Intravenous provision of nutrients when enteral intake is inadequate or impossible.
  • PDA-Pantent ductus arteriosus, an opening in a heart valve that normally closes after normal full term birth. In preemies, there is a chance it stays open. Usually treated with medicine- a blood thinner that relaxes it and closes it. Or if needed a quick minor surgery to close the valve.
  • PICC line -Peripherally inserted central catheter
  • VP Shunt - Ventriculoperitoneal shunt is a surgery performed to relieve pressure inside the skull (intracranial pressure) caused by water on the brain (hydrocephalus). The fluid is drawn off (shunted) from the ventricles of the brain into the abdominal cavity or in rare instances, into the pleural space in the chest.
  • EVD - External Ventricular Drainage, the EVD system uses a catheter (a thin, plastic tube) which is placed in the ventricle of the brain. This is connected to a drainage system (see diagram). The drainage system works by using gravity.

Early Morning

Good morning.... I am up early and getting ready to go see Raegan, she is having her fourth surgery this morning at 9:30a to have her vp shunt put back in. I hoping things go well so she can come home next week. I will post pictures and an update later today to let everyone know how she did.

Tuesday, October 14, 2008

Taco Pockets

I saw these on Rachel Ray and made them. They turned out really good.

Taco Pockets

Recipe Image


  • 2 tablespoons EVOO - Extra Virgin Olive Oil
  • 1 1/2 pounds ground sirloin
  • 1 jalapeño pepper, seeded and finely chopped
  • 2 cloves garlic, finely chopped or grated
  • 1 tablespoon (about a palmful) chili powder
  • 1 teaspoons (about a half a palmful) ground cumin
  • A few dashes hot sauce
  • 2 scallions, whites and greens chopped
  • Salt and ground black pepper
  • 4 large flour tortillas
  • 1 cup taco sauce (whatever variety you like)
  • 1 cup shredded cheddar cheese
  • 1/2 head iceberg lettuce, finely shredded
  • 4 small tomatoes, finely chopped

Yields: 4 servings


Place a large skillet over medium-high heat with 2 turns of the pan of EVOO, about 2 tablespoons.

In a large mixing bowl, combine ground sirloin, jalapeño, garlic, chili powder, cumin, hot sauce, scallions, salt and pepper. Form the meat mixture into four patties. Cook the patties in the hot pan until golden brown and cooked through, about 5 minutes per side.

While the burger patties are cooking, turn a gas burner onto high and blister the flour tortillas by passing them over the flame quickly. If you don't have a gas stove, place a dry skillet over high heat and lay the tortillas, one at a time, into the hot skillet, blistering them on both sides.


As the patties finish cooking, transfer them to the tortillas and top each with some taco sauce, shredded cheese, lettuce and tomatoes. Fold the tortilla around the burger, enclosing it in a pocket. Cut each pocket open on a diagonal and serve.

Monday, October 13, 2008

Surgery #4

Alright Raegan is going to have surgery on Thursday to have her vp shunt put back in. I am hoping surgery will go well and by this time next week she should be back home.

Tuesday, October 7, 2008

Hospital Bill

Just for laughs I thought I would share the statement that I got from the hospital today for Raegans first stay at the hospital.

Date of service 07/03/2008- 09/25/2008

Laboratory -----------------$22,521.34
Other Diagnostic Svc -------$7,353.64
OR Services----------------$12,653.40
Radiology ------------------$11,342.87
Room Charges -------------$305,484.00
Supplies -------------------$16,066.62
Therapy Services ----------$64,454.70
Total Charges -----------$458,972.40

Amount Patient Owes


Video from yesterday of Raegan's external Shunt

Raegan's External Shunt from Cynthia Johnson on Vimeo.

Monday, October 6, 2008

Raegan's External Shunt

These pictures are from Raegan's surgery on Saturday.

Saturday, October 4, 2008


Today those diagnosed with hydrocephalus during infancy are given a good prognosis due to an amazing mechanical device called a shunt. Because of the shunt most children will develop relatively normal intelligence and be able to live normal lives. The risks of damage to the central nervous system are reduced by draining the cerbrospinal fluid away from the brain therefore stabilizing the intracranial pressure. Unfortunately, those needing shunts are prone to multiple problems related to shunt dependency and malfunction. As noted by Doctors Drake and Sainte-Rose, shunts are only a temporary solution for a permanent condition.

As quoted by Doctors Drake and Sainte-Rose: "For inherent technical reasons, it is probable that a "shunt forever" is an impossible dream, but delaying shunt malfunction as long as possible is a realistic goal."

Shunt Revision -
When a shunt system needs to be replaced, the operation is referred to as a revision. Which simply mean to change or modify. When a shunt is first put in place, it is the dream of the neurosurgeon and patient that the shunt will last forever. Unfortunately, shunts do not last forever and it is unrealistic to think they ever will. Shunts are susceptible to failures and malfunctions, just like any other mechanical device. Reasons why a shunt may need to be revised:

* Mechanical failures such as the valve has failed to work correctly.
* Use of the wrong type of shunt valve
* Infections* Obstructions* Need to lengthen or replace the distal catheter or valve.

Signs of Possible Shunt Complications -
If a shunt system fails to operate correctly, becomes infected, or obstructed, the patients life and cognitive faculties are placed at risk. Often times the must be revised under emergency conditions. Most signs and symptoms are identical to those at diagnosis. Other symptoms may relate to a particular type of shunt placement.

Shunt Infection -
Shunt infections are the most serious complication related to the treatment of hydrocephalus. They most commonly occur within one to two months following a placement or revision procedure. It is also known that infection represents the most expensive burden of CSF shunt implantation; an average of 8-45 thousands of dollars are needed for each treated patient. The most common germs involved in early shunt infections are Staphylococcus Epidermidis and Staphylococcus Aureus; these bacteria may enter during surgery, from hair follicles and/or sebaceous glands opened by the surgical incision.

Treatment of shunt infections is usually a long process requiring hospitalization. When you have a shunt infection you are placed on high doses of intravenous antibiotics to fight off the infection. The entire shunt system is removed to prevent any possibility of reintroducing the infection to your body. Because the shunt system must be removed, the CSF will be drained through an external ventricle drainage (EVD) system. An EVD consists of a ventricular catheter, a shunt valve, and a bag which collects CSF at the distal end. With the EVD system you will continue to receive intravenous antibiotics until further tests of CSF indicate that the infection is gone. This could take anywhere from two to fourteen days. After the CSF has been proven to be sterile for seven to fourteen days, your neurosurgeon will insert a new shunt system.

Back in the hospital

As the nurse put it "Raegan is a repeat customer" at the hospital. Raegan had not had gone poop for a few days so I took her to the doctor and they send me to OHSU so they could do a CT scan and see if Raegans shunt was working. The shunt is working, but she has an infection, so they just her back to surgery to take out the internal shunt and place and external shunt until the infection is gone and then she will have surgery to have the internal shunt placed back in. I am guessing Raegan will have to be here for about 3 weeks. If she comes back home sooner that will be great. We will stay here as long as it takes for her to feel better. Well I will post another blog later on today when Raegan is out of surgery and let everyone know how she did.

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Thursday, October 2, 2008


Raegan born July 3rd
Jett born July 21st

Monday, September 29, 2008

Weekly Fact - Week One

Nasogastric tube: A tube that is passed through the nose and down through the nasopharynx and esophagus into the stomach. Abbreviated NG tube. It is a flexible tube made of rubber or plastic, and it has bidirectional potential. It can be used to remove the contents of the stomach, including air, to decompress the stomach, or to remove small solid objects and fluid, such as poison, from the stomach. An NG tube can also be used to put substances into the stomach, and so it may be used to place nutrients directly into the stomach when a patient cannot take food or drink by mouth.

No more feeding tube

After a long night and no sleep Raegan and I got up and got ready so I could take her to the pediatrician for her first visit after leaving the hospital. The doctor said that Raegan looks great. Her weight is up to 5 lbs 7oz. We also took the feeding tube out, Raegan is no longer needing it. That's right Raegan has been eating every feeding from a bottle, and even better she has been eating more than the minimum required amount. On Saturday night we started using the Dr. Brown bottles, let me tell you it works great. We have tried so many bottles and nipples, and this one by far works the best. I recommend it to any one who has an infant.

One last thing, since I have come to know so much about the medical field, I have decided that I would do a medical fact of the week.

Saturday, September 27, 2008

You know you're a preemie parent when...

If this list looks familiar, you might be a parent of a preemie baby! We have to laugh about it to keep our sanity! :)

You know you're a preemie parent when...

You measure everything in cc's

Luxury = sleeping three hours in a row

You can change your baby's diaper with one hand

In the course of the same day, you have wanted to slap and bear hug the same NICU nurse

You feel a secret pull of jealousy when one of your friends delivers full term

You have gotten a rash on your hands from washing with hot water and the NICU soap... eight times in one day

The statement "breastfeeding is simple and natural" makes you laugh -- or cry, depending on the day and the hour.

Your baby has ever outgrown an outfit... while s/he was wearing it.

You cry when you're happy, laugh when you're mad, and throw things across the room when you're sad.

You could drive the route from your house to the hospital in your sleep... and maybe you have.

You can't remember what you talked about before feeding schedules, diapers, and growth charts.

You're more interested in your baby's diaper than the State of the Union

Your idea of a vacation is walking outside to get the mail

When someone offers you their hand to shake, you think twice, envisioning the germs that you might take home from them

The sound of your baby crying is beautiful, not annoying.

While everyone else coos, "He's so tiny!" your six-pound baby looks huge to you.

Your heart almost bursts with love at least once a day

You would climb to the top of Mt. Everest, barefoot, if it would help your baby to grow healthier, bigger, or stronger.

You not only know what "bilirubin" is, you have had several extensive conversations about it.

You never knew how grateful you could feel that your baby has gained an ounce.

You know where all the vending machines are on your floor of the hospital... and which ones have the good snacks.

You literally live your life one hour at a time.

The security guard at the front door of the hospital just waves you in when he sees you.

You are grateful for the smallest things now -- a shower, clean socks, a meal that you didn't have to cook, a friend who has a whole conversation with you without offering you any useless advice.

You had to give up your shower today to make time to read this list.

Friday, September 26, 2008

First day home

Raegan has been home for 24 hours now. I can't believe it. Wait, I can, I was up all night. Being a parent to a child that has been in the hospital since birth is different than being a parent to a child who is at home. Baby in hospital = sleep, baby at home = no sleep. I can't wait until Raegan sleeps through the night. I am sure that will be a while from now. We have to wake her at least every 4 hours to eat. She has to eat 180ml every 12 hours (and in the hospital that would say 180ml Q12). Raegan did come home with a feeding tube (I had to learn how to put that in before she came home, it was not so bad), but we are hoping that she will start eating more by mouth and we can take the feeding tube out soon. Raegan also came home with a monitor. It lets us know if her heart rate drops, or goes to fast. This doesn't happen very often, maybe once every few days, but they just want to make sure that she stops having spells before she stops wearing it.

So any ways on to things here at home. The dogs have been great with Raegan. They come check her out when she cry's. I am sure the dogs are tired from being up some much last night. One of the dogs, Sayde, laid on our bed and leaned her head into the bassinet and just watched Raegan sleep. I wish I would have had the camera.

Well Raegan is just starting to wake up from her nap. It's time to eat. I will post more pictures later on tonight, or sometime tomorrow.

Thursday, September 25, 2008

Coming Home

I am going to the hospital for the last time, I get to bring Raegan home. I am very excited. I will post pictures later and update you on how the day goes.

Tuesday, September 23, 2008

Getting Ready

So I talked with the doctors today and Raegan is going to come home on Thursday. She will still have her feeding tube, and she will have to be on a monitor, but she is coming home. I sure that both will be gone within the next month. Raegan is doing good, she just needs to work on eating more from a bottle, and she does have a spell every few days.

The staff here said that I am a pro and should have no problems at home. I am going with it. I know I will do fine.

So the count down begins until she goes home. 48 hours and counting.

Monday, September 22, 2008

Maybe Friday

News on the street is Raegan might be home by Friday. Raegan just needs to go five days without any bradycardia spells. She has gone two days, so three more to go. If not this week I am sure Raegan will be home next week.

Raegan has changed from her scheduled feedings to just needing to meet a required amount within a 12 hour time period. We are still working on breastfeeding, Raegan is starting to get the hang of it. I think the more practice she gets the better she will do.

I can't wait for Raegan to come home. To think that she will be three months old next week and she has never been outside, the only time she has been out of the NICU was when she went for her surgery's. This will be bitter sweet. I will miss the staff at the hospital, the residents, the nurses, the doctors. I will never forget the people that have come to know us. Raegan and I will be back to visit. This will be a big change, I wont know what to do with myself not driving to the hospital everyday. I am sure that Raegan and I can find things to do to fill our day.

Well for now I better get to bed, but I will keep everyone updated on when she is going to come home.

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