Saturday, February 28, 2009

Nathan's First Hair Cut

Nathan's hair was starting to resemble a little girl's in the back and so Jake and Mom started telling me that he needed a hair cut. I wanted Elisabeth to have her bangs cut for her 4 year old pictures, so I enlisted the help of Stephen (my nephew going to BYU) and took the kids to Fantastic Sams. It was interesting to say the least. The women cutting the kid's hair was Korean and spoke broken English. She did a good job on Nathan's hair and he didn't fuss at all. I was surprised that he did so well. On the other hand, she cut Ellie's bangs WAY TOO SHORT! When I post the pictures taken for her fourth birthday, I had to pull her bangs back to make it look better. Oh well, you win some and you loose some.

Ellie's New Scooter

For Elisabeth's birthday, Jake and I gave her a new scooter that we had actually purchased from Toys R Us last October when all of the stores were competing for customers by offering awesome deals. The scooter was one of them. Elisabeth was with us when we bought it. She picked up the model and started zipping around the store on it without any problems. We were so impressed that a 3 year old was doing that well on a 2 wheel scooter. Jake put it high away in the downstairs closet so it couldn't be found and was saved for her birthday. As soon as her party was over, she begged for Jake to take her out to the driveway. She put on her helmet and she was off! She did really well on it and loves it as much as her bike. Its going to be a fun summer with her.

This first picture is Ellie's true personality. The blue on her face is a marker that she says Kayden drew on her. I know my daughter and I don't believe for one minute that my darling daughter wasn't the co conspirator! In fact, I wouldn't have put it past her to ask him to do it. She's a goofy kid.

Ellie's 4th Birthday Party

Elisabeth celebrated her 4th birthday as we have pretty much celebrated the last couple of her birthdays: at home with lunch and a traditional cake and ice cream chow down. She wanted to have a Cinderella cake and specifically requested a "marrying doll" which Grandma and Grandpa Ellinger happily gave her. She loved being the center of attention on her big day. Next year will probably be the start of celebrating the "big" birthdays, but it was nice to keep it simple another year. By request of Elisabeth, we all had chicken salad sandwiches (which I think is a STRANGE request from a 4 year old for food), but she ate it like it was going out of style.

I can't believe that Ellie is 4! What a crazy 4 years it has been to figure out how to raise her. I wouldn't trade a thing about her.

We love you Ellie!

Nathan's Hospitalization Pictures from 02/01/2009 - 02/06/2009

These are some of the pictures taken when Nathan was admitted to Primary's for bacterial pneumonia. Ellie was VERY concerned that her little brother was back at the hospital and wanted lots of updates to make sure that he was ok and that he could come home.

Nathan's First Birthday Party on January 24, 2009

We made it through the first year of Nathan's life. I've always thought that the first birthday was more of a major milestone for the parents than it was for the child. This year, this was especially true. And in truth, I wondered on Nathan's second day of life if he would live to see his first birthday. I vividly remember the conversation with Dr. Park, an ENT at Primary's, that Nathan needed jaw surgery because he wasn't getting enough oxygen. Jake had told me earlier that day that Nathan also had a serious heart defect that would require open heart surgery, but the doctors were trying to stabilize Nathan before they would decide when that needed to be done. I had only been able to hold Nathan for a couple of minutes on the first day of his life before the Life Flight team transported him and Mom's passing was fresh on my mind. The whole situation felt like an open wound that someone had just poured salt on. As the mother, I had to give permission to and put faith in that doctor to make a decision for a little human being that I barely had seen and hardly knew and a doctor I had never met.

1 year later and 13 visits to the operating room for various procedures and surgeries we have one of the sweetest little boys on the planet with us. Jake and I feel very priveldged to be Nathan's parents even though it has been a struggle and many prayers were said and tears shed over the unknown. What we have learned is that we have a loving Heavenly Father and are surrounded by an amazing group of family, friends, doctors, and nurses.

To celebrate the Big Number 1, we invited our family and friends over for a small lunch and cake and ice cream. We had a Winnie the Pooh theme and purchased a cake from Macey's. Macey's also gives a free birthday cake to the 1 year old. Nathan really didn't want anything to do with that cake and screamed when I put his hands in it and tried to bring his hands to his mouth. Yes, we have a LONG WAY to go with that skill, but its a memory none the less. Nathan had lots of help opening his presents and has loved and played with everything he got.

I wouldn't trade this experience for anything. Yes, sometimes life is hectic and I feel as if we should own our own wing at Primary's, however, we still have Nathan with us. I feel much better about Nathan at age 1 than I did on his second day of life. We have been very blessed.

Tuesday, February 24, 2009

The Never Ending Fight

I've been waiting in my Taxpayer's conference room for a couple of hours to get some information I need to continue the audit. While waiting, I pulled out my never ending stack of medical bills, insurance explanation of benefits, and bills from Praxair. I have spent almost 3 hours on the phone talking to individuals who don't speak great english to tell them that they have billed the insurance companies wrong. This is beyond ridiculous. I am not even half way thru the stack either!

I love Nathan and wouldn't change anything about that little boy. I'd detach myself in an instant from the insurance companies though! And medical billing personnel seem to be lacking something too.

If I had the money I'd hire a personal assistant to deal with all of these problems for me, but then again if we had the money then I wouldn't be as worried about it! Does it ever end???

Friday, February 20, 2009

on HIS own time table - February 20, 2009

I think Nathan is just as stubborn as Ellie. Today when Kim, the physical therapist, came we worked with Nathan for a half an hour to climb the first three stairs. It was painfully slow and Nathan didn't want anything to do with it. After that ordeal, Kim and I went upstairs leaving Nathan and Elisabeth down watching Mickey Mouse Clubhouse. Ellie didn't want to be left behind and so she bolted upstairs to see the action. Of course, if Ellie isn't there, Nathan doesn't want to be there either. He crawled from the TV to the stairs and proceeded to climb all 13 stairs. Ellie cried out, "Mom, look at Nathan!" Well, she says this all the time so I ignored her while I was signing the paper Kim had for me. Ellie got mad and said, "MOM, Nathan's almost up the stairs!" So I went to the top of the staircase and sure enough in less than 3 minutes, Nathan had climbed to the top of 13 stairs. What a stinker! He just wants to do everything when no one is looking and when HE feels like it.

I'm glad he's making progress, but really, 30 minutes to climb 3 stairs?

Thursday, February 19, 2009

The New Love of My Life is a Spoon

Alright, so Jake is still the love of my life, but following the kids, this comes next.

Nathan is starting to eat small bites of food (bananas and pudding) from this spoon. It is so awesome because you put the food inside of the spoon and can squeeze it to get food in the child's mouth after they've put the spoon in the mouth thinking there was no food on it! Nathan is averaging about 4 bites of food getting into his tummy before he's tired of it. Last week for Mary he even leaned forward to try to get food from the spoon himself. I was almost in tears by it last Friday. He loves it because its like a toy to him and I like it because we're seeing progress with it. Hopefully we can make some more progress before his cleft repair on the 27th of March!

Wednesday, February 18, 2009


I found this off of my friend, Ashley's blog, who has a beautiful little girl a couple of weeks older than Nathan. These two are heart buddies and were in the NICU at Primary's together. Anyway, I liked the questions and so I'm posting them on my blog to answer.

* Was your first pregnancy planned? Yes

* Were you married at the time? Yes, for 2 years

* What were your reactions? I was so excited, and floored. Jake almost had a nervous breakdown.

* How did you find out you were pregnant? I was feeling really tired and awful. We were living with Janice and Mom for a couple of weeks when we were buying our townhome. Janice said I should take a pregnancy test. So I did. I came out of the bathroom and before I even said anything to Jake he was having a nervous breakdown.

* Who did you tell first? Jake!

* Did you want to find out the sex? Can Jake hold off till Christmas or his birthday to find out what his present is? Of course we had to!

* What was your due date? February 22, 2005.

* Did you have morning sickness? YES!!!

* What did you crave? Brick Oven Pizza

* What is the sex of that baby? A little (wait - 9lbs 11 oz isn't little!) girl

* How many pounds did you gain? I refuse to publish that information on the internet!

* Did you have any complications? No, but the doctors knew how big she was going to be so I elected to have her as a c-section. She would have been over 10lbs at birth had I tried to have her normally and I probably would have ended up with an emergency c-section anyway.

* How many hours were you in labor? ZERO

* Who was in the delivery room? Jake, Dr. Judd, Dr. Gordon, the "happy" doctor aka the anethesiologist, and a couple of nurses.

* When was your baby actually born? February 15, 2005

* How much did she weigh? 9lbs 11 oz

* What did you name her? Elisabeth Louise Ellinger, Elisabeth after my sister who passed away as a toddler- spelled with an S for biblical significance, and Louise after my mom who never had a grandchild named after her. We wanted her to be nicknamed Libby Lou but Jake's sister was already using the name Libby so we settled on Ellie.

* Will I do it again? Maybe. We'll wait to see about having another till Nathan gets older and more self sufficient. We're still having 3-4 doctor visits a month for him and therapists that come every week. Its gonna be a while, but hey, Ellie and Nathan are 3 years apart so we'll see.

I'm tagging the following to write about it on their blogs:

Kristen, Calli, Janice, Tammy, and Mom.

Monday, February 16, 2009

Happy 4th Birthday Elisabeth!

I can't believe my once upon a time baby, infant, toddler is now a self proclaimed "Big Girl". Yesterday she turned 4! I remember pretty vividly when she was born. Both her grandma's were there loving that Ellie was given my mom's name as a middle name (Louise) and that she was born on Jake's mom's birthday too! I don't think it was chance either that she is tall like her Grandma Ellinger and sports the dark brown hair with a little bit of spunk like my mom. Did I say a little bit of spunk? I meant a lot of spunk around her family but when she's put in a public situation she is more reserved. She remembers my mom to some degree still and calls her "my old grandma" and Jake's mom "my new grandma". She loves them equally.

Ellie at birth:
9lbs. 11 0z.
21 1/2 inches

Ellie now:
41 pounds
I'm not sure the inches, but at 4 she is wearing size 5 in girls and isn't in the toddler section anymore!

Here's my top 10 favorites about Ellie in no particular order:

1. She has EXCELLENT communication skills. She started saying words such as ball, momma, dadda, and duck at 12 months. Now she's moved onto actually, coincidentally, definitely.

2. She is a princess. Need I say more?

3. She loves to play barbies and go to ballet but isn't afraid of playing trains or watching baseball with dad.

4. Every morning that she wakes up before I leave to work, she wanders in like a zombie to say "Good morning mom. Be safe at work and don't go by the bad man". (Quick explanation... I had a taxpayer's dog bite me last summer and I told Ellie that guy was a bad man. Ever since she won't stop talking about him.)

5. She's an artist.

6. She's my little side kick at the grocery store.

7. Even though she's outgrowing my lap, she still loves to sit on me at church and fall asleep. "Will you cuddle with me mom?" is one of her most used phrases.

8. She has child like faith. Whenever its her turn to say family prayers she always blesses Nathan and Grandma Ellinger. A couple of weeks ago she stopped blessing grandma. When asked why she said, "...because Heavenly Father already made her better. Now its Nathan's turn."

9. She has embraced having her little brother and his issues. She loves him even if she is being too much of a mother sometimes. She knows how to run his feeding pump and to get his food. She even shows him some of the new signs from Signing Time that she is learning.

10. She is very smart and thinks for herself. She will always let you know if you've had a good idea, a great idea, or um... I don't think that will work idea.

We are blessed to have her in our family. We love you Ellie!

Friday, February 13, 2009

Signing Time

Pam, is giving away signing time dvd's. One of the ways to qualify is to write a blog entry about why I want to win!

As many of you know, Nathan loves to babble! Unfortunately, because of his jaw surgery, cleft hard and soft palates, and several other facial anomalies, he doesn't do much or take anything orally. Its thought by the doctors that when he underwent jaw surgery at 3 days old (since he stopped breathing in the NICU on the second day of his life because his jaw was too recessed), the he lost some feeling in his tongue. We are still working on him being able to close his mouth comfortably. At 13 months old now, Nathan's speech level is that of a 6-7 month old. He has yet to make any consonant sounds such as baa, mama, da da, etc. He hasn't reached the pointing stage either.

I've always been grateful that I was given this sweet little boy. He's had excellent medical care (for the most part) and I love Mary, our speech/feeding therapist. However, I'm not super mom and I have no idea or professional training on how to help Nathan talk. Its going to be a long process.

That's where Signing Time comes in. Santa brought Nathan a couple of Baby Signing Time dvds for Christmas. He LOVES to watch them with Ellie. He hasn't started doing the signs yet, but Ellie has and when I ask her to talk to Nathan with signs and words, she does. Ellie, who will be 4 on Sunday, is Nathan's best teacher. She loves it and because he wants to be just like her, Nathan loves it too.

When I'm home from work, I always try to pop on one dvd for the kids to watch. I don't get tired of the songs, and man, in one song it talks about eating and shows kids drinking! Nathan needs to see that (even if he could care less right now!) I think that Signing Time has some phenomenal products!

Monday, February 9, 2009

CHD Awareness Week

Congenital Heart Defects Awareness Day is February 14th. Here are some statistics and information on CHD's:

What is a congenital heart defect?
Congenital means it is present at birth. Heart defects begin in the early stages of pregnancy when the baby's heart is forming.

What does CHD stand for?
It's the abbreviation for congenital heart defect.

How many babies are born with CHD?
Approximately 40,000 babies are born each year in the United States with a CHD. That equates to 1 out of 125 babies born with a heart defect.

It is the #1 birth defect with more occurrences than Spina Bifida, Down syndrome or hearing loss yet many are not aware of this condition.

What is the number one birth defect?
Congenital heart defects.

How many kinds of CHD are there?
There are approximately 35 different types of congenital heart defects.

How are congenital heart defects treated?
Today, most heart defects can be corrected or helped with surgery, medicine, or devices, such as artificial valves and pacemakers. In the last 25 years, advances in treatment of heart defects have enabled half a million U.S. children with significant heart defects to survive into adulthood. Need help in deciding where to go? Here's an article that will help.

Is there a prenatal test for CHD?
An echocardiagram can accurately detect many heart defects. This test needs to be performed by a specialized doctor and not an obstetrician. Some heart defects can be detected through routine ultrasound.

What causes congenital heart defects?
In most cases, scientists do not know what makes a baby's heart develop abnormally. Genetic and environmental factors appear to play roles.

Scientists are making progress in understanding the genetics of heart defects. Since the 1990s, they have identified about 10 gene mutations (changes) that can cause isolated (not accompanied by other birth defects) heart defects (3). For example, a March of Dimes grantee identified a gene that can cause a heart defect called an atrial septal defect (a hole between the upper chambers of the heart), and one that may contribute to hypoplastic left heart syndrome (underdevelopment of the heart’s main pumping chamber) (4, 5).

Environmental factors can contribute to congenital heart defects. Women who contract rubella (German measles) during the first three months of pregnancy have a high risk of having a baby with a heart defect. Other viral infections, such as the flu, also may contribute, as may exposure to certain industrial chemicals (solvents) (2). Some studies suggest that drinking alcohol or using cocaine in pregnancy may increase the risk of heart defects (2).

Certain medications increase the risk. These include (2):

The acne medication isotretinoin (Accutane and other brand names)
Thalidomide (approved only for a rare, severe skin disorder, but sometimes used for other conditions) Certain anti-seizure medications
Some studies suggest that first-trimester use of trimethoprim-sulfonamide (a combination of antibiotics sometimes used to treat urinary-tract infections) may increase the risk of heart defects (2).

Certain chronic illnesses in the mother, such as diabetes, may contribute to heart defects (2). However, women with diabetes can reduce their risk by making sure their blood sugar levels are well controlled before becoming pregnant.

Heart defects can be part of a wider pattern of birth defects. For example, at least 30 percent of children with chromosomal abnormalities, such as Down syndrome (mental retardation and physical birth defects) and Turner syndrome (short stature and lack of sexual development), have heart defects (3). Children with Down syndrome, Turner syndrome and certain other chromosomal abnormalities should be routinely evaluated for heart defects.

Heart defects also are common in children with a variety of inherited disorders, including Noonan syndrome (short stature, learning disabilities), velocardiofacial syndrome (craniofacial defects and immune deficiencies), Holt-Oram syndrome (limb defects) and Alagille syndrome (liver, skeletal and eye defects) (3).

What are some of the most common heart defects, and how are they treated?

Patent ductus arteriosus (PDA): Before birth, a large artery (ductus arteriosus) lets the blood bypass the lungs because the fetus gets its oxygen through the placenta. The ductus normally closes soon after birth so that blood can travel to the lungs and pick up oxygen. If it doesn’t close, the baby may develop heart failure. This problem occurs most frequently in premature babies. Treatment with medicine during the early days of life often can close the ductus. If that doesn't work, surgery is needed.

Septal defect: This is a hole in the wall (septum) that divides the right and left sides of the heart. A hole in the wall between the heart’s two upper chambers is called an atrial septal defect, while a hole between the lower chambers is called a ventricular septal defect. These defects can cause the blood to circulate improperly, so the heart has to work harder. Some atrial septal defects can be repaired without surgery by inserting a thin, flexible tube into the heart and then releasing a device that plugs the hole. A surgeon also can close an atrial or ventricular septal defect by sewing or patching the hole. Small holes may heal by themselves or not need repair at all.

Coarctation of the aorta: Part of the aorta, the large artery that sends blood from the heart to the rest of the body, may be too narrow for the blood to flow evenly. A surgeon can cut away the narrow part and sew the open ends together, replace the constricted section with man-made material, or patch it with part of a blood vessel taken from elsewhere in the body. Sometimes, this narrowed area can be widened by inflating a balloon on the tip of a catheter (tube) inserted through an artery.
Heart valve abnormalities: Some babies are born with heart valves that do not close normally or are narrowed or blocked, so blood can’t flow smoothly. Surgeons usually can repair the valves or replace them with man-made ones. Balloons on catheters also are frequently used to fix faulty valves.

Tetralogy of Fallot: This combination of four heart defects keeps some blood from getting to the lungs. As a result, the blood that is pumped to the body may not have enough oxygen. Affected babies have episodes of cyanosis and may grow poorly. This defect is usually surgically repaired in the early months of life.

Transposition of the great arteries: Transposition occurs when the positions of the two major arteries leaving the heart are reversed, so that each arises from the wrong pumping chamber. Affected newborns suffer from severe cyanosis due to a lack of oxygen in the blood. Recent surgical advances make it possible to correct this serious defect in the newborn period.

Hypoplastic left heart syndrome: This combination of defects results in a left ventricle (the heart’s main pumping chamber) that is too small to support life. Without treatment, this defect is usually fatal in the first few weeks of life. However, over the last 25 years, survival rates have dramatically improved with new surgical procedures and, less frequently, heart transplants (6).

Information posted was from the March of Dimes and Little Hearts Foundation.

Before I had Nathan, I was clueless to what a congenital heart defect was and how often it occurs in pregnancy. I pretty much thought that you go into the ultrasound at 20 weeks for find out if we should buy blue or pink. Boy, has my view on this subject changed drastically over the past year!

The sad thing is that CHD's occur more often than childhood cancer and that 20% of the children with CHD's will not live to see their first birthday. In the United States, twice as many children die from congenital heart defects each year than from all forms of childhood cancer combined, yet funding for pediatric cancer research is five times higher than funding for CHD.

Many of these children will need heart transplants and yet there are not many donor hearts available for this age group.

Please consider becoming an organ donor!

Friday, February 6, 2009


We made it home this afternoon! Nothing grew out of the blood cultures; but that only says that the infection didn't make it into the bloodstream. That was a huge blessing. Nathan will be taking antibiotics for the next 2 weeks (his white blood cell count started out really high and then dipped way below normal by Thursday). Nathan also has a nasal cannula for oxygen during naps. Hopefully he will only need that for 2-3 weeks.

What a week! We're glad to have him home and appreciate all the help that has been given to us. Nathan isn't going to have his cleft surgery next week. It won't happen until sometime at the end of March or first of April. That's ok though. I don't want him having an oxygen need before the surgery; especially when his throat will swell for several weeks after the cleft repair.

Monday, February 2, 2009

Admitted back into Primary's

On Saturday morning, Nathan starting running a fever. Since it wasn't terrible, I gave him some tylenol and since he didn't have any other symptoms, I thought it was probably because he was teething. On Saturday night, Janice & Don took me to the Texas Roadhouse. That's when Nathan started running a fever of 102.7. I gave him some more medicine and because we were in Tennessee, I decided to wait till we got home to go see a doctor. His fever spiked 103 in the middle of the night, even when I was alternating tylenol and motrin. On Sunday morning he wasn't particularly playful and was still running a mid-grade fever. I took the kids on the plane and Nathan slept the whole way to Denver, except that he was extremely restless. On the plane ride from Denver to Salt Lake he started screaming at the top of his lungs (which is a very un-Nathan thing to do. He basically only cries when Elisabeth is giving him "too much love"). We hadn't even started going down in the plane when the screaming started. I had the thermometer in the diaper bag and when I took his temp it had gone up to 103.5.

I had managed to calm him down after the plane finally landed but since Nathan wasn't coughing, congested, or showing any signs of a rash or sores, I told Jake that since we were in Salt Lake anyway that we should take him to Primary's to have him checked out. Going to the ER in the middle of the Super Bowl wasn't so bad... there wasn't a line to get in the door. They did lots of blood tests and mucus tests and the only thing the doctors can figure out is that Nathan doesn't have RSV or hand foot and mouth disease. He has an extremely high white blood cell count and a few other tests show that he likely has a bacterial infection; although no one can be positive of that for sure. So for the time being, they are treating Nathan as if he has pneumonia. The blood cultures haven't grown anything yet, but it could be as long as 48 hours before they see anything. Since Nathan was having a hard time breathing, he was admitted and now we are just playing a waiting game.

Nathan is a real trooper about all of this. He did fairly well last night except that he needed 3 liters of oxygen with his bipap machine. Hopefully today he won't need a nasal cannula like he did last night when he was admitted to help him breathe.

I'll post more information when I know it. As for now, Nathan's just sleeping and hoping that he won't be a human pin cushion anymore!