Wednesday, December 31, 2008
Rolled over
Friday, December 26, 2008
Mommy & Daddy's Igloo
Christmas Pictures
Thursday, December 25, 2008
Merry Christmas
Monday, December 22, 2008
Nutter Butter Balls
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.
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
Snow
Friday, December 19, 2008
8lbs
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
Burrrr
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
Sunday, December 7, 2008
Sleeping
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
Monday, December 1, 2008
Big weekend
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
Wednesday, November 26, 2008
Oh so busy
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).
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
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
Home
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
Friday, October 17, 2008
Thursday, October 16, 2008
Surgery went great
Definitions
- 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
Tuesday, October 14, 2008
Taco Pockets
I saw these on Rachel Ray and made them. They turned out really good.
Taco Pockets
Ingredients
- 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
Preparation
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
Tuesday, October 7, 2008
Hospital Bill
Date of service 07/03/2008- 09/25/2008
Laboratory -----------------$22,521.34
Other Diagnostic Svc -------$7,353.64
OR Services----------------$12,653.40
Pharmacy------------------$19,095.83
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 $500.00
Video
Raegan's External Shunt from Cynthia Johnson on Vimeo.
Monday, October 6, 2008
Saturday, October 4, 2008
Hydrocephalus
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
Thursday, October 2, 2008
Monday, September 29, 2008
Weekly Fact - Week One
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...
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
Tuesday, September 23, 2008
Getting Ready
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
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.