Ellinger Enquirer

Sisters

2011-08-24T15:14:00.000-07:00

"A Sister is God's way of proving He doesn't want us to walk alone"

Author: unknown

In Love

2011-08-24T14:58:00.001-07:00

On the day I was married, I thought to myself... The is the best day of my life EVER!

On the day Elisabeth was born I recanted that statement when I saw Jake holding her in his arms looking so excited to be a Dad.

Though the day Nathan was born was very scary and many tears were shed for the unknown, I counted my blessings and thought that his life was going to help make mine happier and more complete.

I again recanted my statement when Emmaline was born. I was excited for Jake to once again hold a healthy baby and for Elisabeth & Nathan to have a sister. As I watched Elisabeth and Nathan hold her together for the the first time again I found myself thinking "This is the best day of my life EVER!".

I took these pictures on a Sunday morning when Emmaline was one month old. Though I was a little frustrated that each child wasn't entirely cooperating with me and the camera, I had this feeling of love come over me for each of my children. I am very much in love with each of them and cannot wait for all of the good days to come when I can think "This is the best day ever!". I feel very blessed to have them in my life.

A Conspiracy

2011-08-23T07:46:00.001-07:00

Monday nights for the last three years have ALWAYS been hectic at our house. Its hard when I get home at 6:00 p.m. from work and bedtime is at 8:00. We rush through dinner, try to clean up somewhat, and then pull together a family home evening lesson or activity. Since yesterday was the first day of school, it was particularly hard to get everyone moving to have fun. Everyone was EXHAUSTED from Jake & I right down to Emmaline. We had a fun family activity of making sand art in leftover orange cream soda bottles and then got the kids into bed.

Our children are usually pretty good about going to bed when they are supposed to, but last night they were having a hard time. Nathan, especially, was so tired! Jake tried to put him in bed and Nathan just ran into Ellie's room. He was crying that he wanted to sleep by her in her room. I guess Ellie has been reading stories to him at night before bed and he wanted to cuddle by her and listen to a story. He was crying so hard that Ellie put her arm around him and proceeded to tell him to just go in his room and that when Mom and Dad weren't watching he could come back and cuddle with her. I was standing right in the room when she told him that! I'm not sure if I should have been mad at her or pleased that she wanted to make her brother feel better. So Nathan walked back to his room and got into his bed. I went downstairs for a couple of minutes and when I came back up Nathan was on Elisabeth's bed asleep and Ellie was on her floor with her head on a bean bag also asleep.

I love that my children love each other and try every now and again to make each other happy. I wish I would have taken a picture of them last night, but I didn't want the flash from the camera to wake them. It was very satisfying to see them together like that.

1st Day as a "Grader"

2011-08-22T09:58:00.000-07:00

This is Elisabeth's first day of Kindergarten:

First Day of First Grade:

Elisabeth is officially a "grader", the term she gave to the older kids while she was in kindergarten. She wanted desperately to be a "grader" and be at school all day long with her dad and her friends. Today she got her wish. She woke up very excited and ran into my room at 6:15 a.m. to wake me up. She was quite upset at me for not already being up. It had been a long night with the baby and I just couldn't pull myself out of bed! She matter of factly told me I had to help get her ready for school so that she wouldn't make her dad late!

I pulled myself away from the clutches of my soft pillow and a warm baby I had cuddled up next to after feeding her at 5:00 a.m. and proceeded to help Elisabeth get ready. The first drama was that her socks (which were knee length for her skirt) did not EXACTLY go to the same length on each of her legs. After a little adjusting, we moved on to the next problem... her hair. I brushed her hair and flat ironed it to put her headband in. She was very perturbed that her hair length on each side wasn't EXACTLY the same length either. I ended up adjusting the headband and straightening out her hair a bit more and for some strange reason her hair length was the same again! She also needed the perfect breakfast of scrambled eggs. Jake made the mistake though of making YUMMY eggs instead of the plain eggs Ellie had asked for. Oops. Mental note - she is not a fan of fresh tomatoes and ham in her eggs for breakfast. After she picked at her breakfast Kathleen and Shanowa came over. I quickly took some pictures of Ellie outside, Ellie called grandma, and then Jake and Ellie were on their way for the first day of school. I should have taken a picture of her and Jake together, but Jake was frantically trying to pull his life together to get out the door! It was so cute to see them leave together and I'm so grateful that Ellie gets to go to school with her dad.

Even with the drama of the morning, I have to be grateful that Ellie didn't take it as far as my other niece, Jessica. Jessica was such a perfectionist that some days she would refuse to go to church or school because her hair wasn't just right, or her clothes were wrinkled, or she didn't like what she had to wear! There must be something about those girls who are headstrong. Jessica starts medical school next week in St. Louis. I wouldn't mind if Ellie followed in her footsteps! First things first... gotta make it through the 1st grade!

Emmaline's Blessing Day

2011-08-18T15:01:00.000-07:00

Emmaline was blessed on August 7th in our ward. You would that by having 1:00 church that it would be a piece of cake to get 3 kids ready, take some pictures, have the food for the luncheon ready, and make it there on time. Easy peezy-super cheesy (which is Ellie's new favorite term). Not so. Getting all of the kids bathed and dressed tended to be more of a problem than it should have been. Nathan's dressing needed changing, Ellie had wet the bed, and sure enough just before putting Emmaline's dress on she had a blowout. To the tub all 3 children went, even though they were all bathed the night before so it wouldn't be a problem! It wasn't that getting dinner ready was hard, it was just took time. Emmaline must have sensed that we were in a rush to get ready so she put a halt to all of that by needing to be nursed more than usual. And the list goes on and on...

We were at the church at 12:50. I count that as a small miracle, especially since I had to play the organ that day. After everyone was seated I breathed a sigh of relief that we were there and in one piece!

Jake blessed Emmaline and thank goodness after much teasing that her name ended up being Emmaline Reagan Ellinger. It was a beautiful blessing. Jake was very calm and collected in his thoughts. She was blessed that she would be a leader. She has such a calm personality and I believe that she will be some day.

After sacrament meeting, we went to the clubhouse and had small luncheon. It was so fun to show off the baby to everyone. After we went home that evening and I had a moment to think while nursing the baby, I decided that was the perfect way to end my maternity leave. We celebrated being a family, which in my book, means more having all of the diamonds or gold in the world. My husband and children are the crown jewels of my life.

It feels so nice that for the first time since having children I am not afraid of my baby. You know that first time you brought home your first child and the thought of "What on earth am I doing?" haunts you? I loved Ellie, but it was very different being a first time parent. Then Nathan came along...if I thought I was scared of Ellie, I felt that I had just walked out unarmed on the front line of a battlefield in the Civil War. It was new and very scary territory. But just like with Elisabeth we were blessed with the ability to be able to learn and appropriately respond to his needs. Emmaline's birth was so much different in that respect for our family. We were excited and felt prepared for her. I can hold her and am still in awe of being her mother, but not afraid to face the challenges that might come with her. I feel very blessed beyond what I truly deserve to be the mother of Elisabeth, Nathan, and Emmaline.

Yes - She was born a month ago and I'm finally getting around to posting about her...

2011-07-15T19:43:00.000-07:00

Meet Emmaline Reagan Ellinger -

Born June 13, 2011
8 lbs 3 oz
21 1/2 inches

As far as the birth went compared to the other 2 kids, she was as easy as can be. Emmaline was a scheduled c-section. We got to the hospital at 5:30 a.m. (we should have been there at 5, but I just couldn't get myself moving that morning!). The kids had spent the night with Jake's sister, Kathleen, and so we didn't have anyone to drop off. The night before I was reading a book and just couldn't put it down. I had no kids to take care of and I really was into that book! Finally at midnight Jake and I decided to go to bed. I tried my best to get up and moving at 4:15, but I just couldn't do it. We quickly got ready and left our house at 5:15 or so. We arrived at Orem Community Hospital at 5:30. The nurses quickly got me to a room and I got dressed for the surgery. As usual, it took 4 pokes to find a vein for an iv. After dealing with that, I walked to the OR with Jake by my side and slid onto the operating table. No problems with the spinal. The best part was that a friend from my ward, Kayla Augastine, scrubbed in the surgery to help out. Dr. Judd arrived and everything went very quickly from that point. Janice, my little sister, and Patsy, Jake's mother, were waiting very patiently outside of the OR watching it all happen. After Emmaline was taken out, she was shown to me. She had a good husky cry. When I heard it I was relieved! She was not gasping for air like Nathan was. She was big, beautiful and PINK! She looked so much like Elisabeth when she was born. After the operation was complete, the dr's and nurses helped move me to a bed which was when I got so sick! I began throwing up and the nausea and vomiting didn't end till late that night.

Once I was back in my room and made comfortable, Emmaline was brought to me. I almost cried holding her in my arms. I guess I didn't realize how much that moment would really mean to me. I didn't have a 3 minute glance at my child and have her wisked away wondering what was going on. I was able to hold her, smell her, and appreciate that little life that was given to me. She did have a hard time learning how to nurse, but that was so mild compared to any other problems.

The problem with having a c-section is the sleepy, loopy feeling that I always have. This time was no different. After trying to feed the baby, she was passed off to a more that willing Aunt Janice and Grandma Ellinger to be loved and smothered! The best part of the day was when Nathan & Elisabeth were brought to the hospital to meet their new sister. Nathan just kept asking if she was his sister that came out of my belly and Ellie was love-struck!

Nathan sat and read Emmaline Mickey Mouse and Elisabeth kept telling Emmaline that she was her big sister and how much she loved her. There's just something so satisfying about seeing your children respond to another sibling like that.

As for Emmaline's name... Jake and I couldn't reach an agreement on her name till she was 3 days old. I loved the name Emma or Emily, but Jake wasn't to hip on either. Kathleen suggested Emmalyn and Janice said she liked Emmaline. Once I told Jake that Emmeline Wells was such a prominent figure in both Mormon History and American History he was all for that name. At first it seemed like such a proper name for a little baby, but it really does seem to fit her. I was released from the hospital on Friday morning. I felt ready to go home and to be a mother.

As an older woman in my ward put it, Emmaline is the reward for taking care of Nathan. Before having kids I couldn't understand how you can love your children so much and each of them on an individual basis. I love Nathan for who is he and what he has overcome and will yet overcome. I love Emmaline and feel so blessed that she is healthy and content. To be a mother of 3 has been an interesting change, but a welcomed one.

KSL & Reagan Reads

2011-04-21T07:21:00.000-07:00

Elisabeth has been participating in the Reagan Reads program at her school. Her goal every month is to be the first one in her class to be part of the 500 Club, which is a group of kids that read 500 minutes every month. Ellie has been a member of the 500 club every month of this school year. They get rewards like free miniture pizzas from Pizza Hut, an ice cream from McDonalds, or a hamburger from Burger King. Her reading abilities have really picked up since January and it has been nice to see the progress she is making!

Yesterday KSL's Chopper 5 paid a visit to Reagan Academy since it is one of the top schools in the state for the number of minutes tracked on KSL's Read Today program. Ellie was chosen by her teacher to be one of the "greeting group" of students that got to go meet the Easter Bunny. She was SO EXCITED to be chosen. At dinner last night we were talking about how her day was at school and she told me all about the helicopter and meeting the Easter Bunny. I told her that when I was in school that I didn't ever get to do anything that cool. Jake piped up and said when he was in elementary school he was able to meet Govenor Bangeter. Ellie was very unimpressed. "Dad, that is no where near as cool as meeting the Easter Bunny!" Apparently meeting a fictional character outranks the leader of a state.

All of that aside, having this visit and seeing herself on tv last night made Ellie even more motivated to keep working on her reading. This is a great program that KSL offers to the kids!

Intermountain Healing Hearts 5K

2011-04-12T12:26:00.000-07:00

In January I began my term as the acting treasurer of Intermountain Healing Hearts which is a non-profit organization that supports families with loved ones of congenital heart defects or onset childhood heart disease. We are so excited that this year the organization will be adding a 5k to its list of events. We are working towards raising money for the Heart Camp in August which is a family camp for heart families that is held at Camp Wapiti. If you are a runner and/or knows someone who loves to run - this is for a great cause!

This year I will not personally be running (with a pretty good excuse of being 36 weeks pregnant :), but next year I plan on participating even though I have never been that great of a runner!

Registration can be done through IHH's paypal account. The registration form is as follows:

http://intermountainhealinghearts.org/registrations/5k/

Hope to see you there!

Grandma Ellinger's Funeral & Trip to Northern California

2011-04-05T08:39:00.000-07:00

Jake's grandmother, Marion Ellinger, passed away on March 18th in Sacramento, CA. We drove to Northern California to hold a memorial service for her with Jake's sisters Kathleen and Kristin. Since it was snowing heavily in the Sierra Nevadas and Donner Pass was closed, we opted to drive to Las Vegas, then over to Bakersfield, and then up to Sacramento. We were fortunate that we were able to stay at Jake's Uncle Tom's home in St. Helena.

We arrived in St. Helena on Sunday evening. The following day we drove to Sacramento to meet Sheena and Maryn at the Nut Tree. We were disappointed that the rides were not open yet for the season, but the kids still had a good time playing with each other on the wooden horses, the teeter-totter, and the merry-go-round. I am so grateful that my kids have cousins so close to their ages that they can play with!

On Tuesday morning we held the memorial service at the LDS branch chapel in St. Helena. What a beautiful spirit we felt. Jake's dad, Bruce, gave a wonderful history on his mother. Kathleen and Sheena sang a duet, Jake gave a talk for the children on what happens to our spirit after we die, I played a piano solo, and Kristin helped the children sing "I Am a Child of God". Libby, Mallory, Elisabeth, Nathan and Maryn sounded WONDERFUL! I think grandma would have been very proud of their little voices that sang with such conviction. Even Nathan tried to sing some of the words and to be somewhat reverent. We also gave a memory of grandma and talked about her for a little while.

I wished that we could have stayed a couple of days to enjoy being together as a family, but alas, with the snow clouds looming we drove home after the luncheon for the funeral. It was much better to drive home on I-80 than the detour we took to get there!

I know that Grandma was not LDS, but her character and convictions in life helped to shape many other's lives. Her choices brought about many grandchildren and great-grandchilren who are pretty special people. We will miss her dearly.

Cardiololgy Update

2011-03-31T08:38:00.000-07:00

On March 17th Nathan, Jake and I went to the extension of Primary Children's at Riverton for Nathan's annual cardiology visit. I LOVED going to Riverton because it was so much quieter, cleaner, and efficient! But I digress...

Before Nathan was able to see Dr. Cowley, he was tested for his oxygen saturations, had a blood pressure check, weight check, an EKG, and his first Echo where he was awake for the technician. I was a little nervous about the echo since it took about 50 minutes to complete and the child is required to hold absolutely still the whole time. That had potential to be a lot for a little 3 year old and even more headache for Mom and Dad! Nathan is such a trooper though and knows the drill. He weighed in at 28lbs (he had a bad week this past month where he was very sick and throwing up most of his food). His oxygen level was 93% which is EXCELLENT! I can't remember what his blood pressure was, but there wasn't any indication for concern.

The only problem we encountered with Nathan is that lately he is VERY into Superman (as you can see by the shirt that he wore that day.) He didn't want to take it off and it took more time convincing him to take his shirt off than it did to do the EKG! Once he had his shirt off though, the EKG went by very quickly with the expected results that a child in Nathan's stage of heart function should be at.

I was so nervous for the echo part of the visit, but it actually turned out to be pretty easy. Nathan was a little nervous as we laid him down on the bed, but once we had Toy Story on and the room was dark he zoned right into the movie and didn't pay attention to the cold gel all over his chest. Jake and I found watching the screen with the images of Nathan's heart very interesting. We could actually see where his pulmonary valve should be and the amount of backflow from the pulmonary artery as there is no valve there to push all of the blood to the lungs. It amazes me that a child can live his life without an essential part of his heart like that.

The results of the echo showed:

1. Severe pulmonary insuffiency
2. Moderate tricuspid valve reguritation
3. Mild mitral valve reguritation
4. No increase or decrease in the right ventrical from the last echo
5. Pulmonary hypertension

When we spoke with Dr. Cowley, he indicated there was no major changes from Nathan's last echo. That means that his heart has neither gotten better or worse. We know that Nathan's heart will not get better... we are buying time before there is enough evidence to support his right ventrical is in failure or getting too large and that he will need another open heart surgery to place a brand new pulmonary valve. Once a new valve is placed in Nathan, he will be having a valve replacements using the catheters through the groin every 3-10 years of his life. Jake and I are praying that in the next 3-5 years there will be enough advancement in the knowledge of pulmonary valve replacements that Nathan will not need a new valve put in using the traditional heart/lung bypass that occurs with open heart surgery. Nathan will also still need a tricuspid valve replaced in early adulthood.

We are very grateful for the news about Nathan's heart. It is also to our advantage that Nathan does not grow quickly which is causing less strain on his heart. Dr. Cowley was supersweet with Nathan. He drew a picture of Nathan and then placed him in a superman outfit. Nathan thought that was awesome and he is now referring to himself as Superman.

Yes, Nathan... you are our little Superman!

Debit Cards vs. Cash

2011-03-28T09:30:00.000-07:00

Over the past couple of weeks Jake and I have decided that Elisabeth is old enough to work for an allowance. We are chinsy... she gets a measly $1.00 a week to be paid in nickels. We have been having problems in our house with having toys put away after kids are done playing, with not flushing the toilet, and being too sassy. Ellie earns $1.00 for doing her assigned chores for the week. It costs a nickel if Mom or Dad had to pick up a discarded toy on the floor and put it in "The Store of Mom and Dad". If Ellie wants the toy back she has to pay us a nickel. She is also notorious for not flushing the toilet. In order to break this disgusting habit it will now cost her a dime for every time she forgets. Being sassy or back talking about doing chores makes it so that she cannot earn her dollar at all. She knows the drill and has had to pay up Mom and Dad for the things she has forgotten to do. Thankfully she also realized that she has the money to do it and having the toys picked up and the toilet flushed has become much easier for her!

So after several weeks of this, Elisabeth has earned enough money to purchase some sidewalk chalk and a mini paint set she has had her eyes on for a while. She took her money jar into Target with me on Saturday and after we picked out her purchases, she was very concerned.

Ellie: "Mom, are you sure that Target takes nickels and dollar bills? I mean, you ALWAYS use your debit card. I don't think they take cash!"

Me: "Its ok. Cash is better than a debit card any day."

Ellie: "Ok..." (I could tell she didn't believe me at all).

So we got up to the checkout line and she proudly handed her purchases over to pay for them. She pulls out her money and proceeds to count by 5's the correct amount of change. She eyed the checker very closely and said, "Mom says you take cash; its all I have. I'm too young for a debit card!"

But something magical happened at that checkout line. Ellie learned the value of money and hard work. She used her math skills to figure out what she could afford to buy and didn't ask for anything more than what she could afford by herself. She used her math skills to count the appropriate amount of change by herself and even if the cashier couldn't believe that it took so long to help Ellie, Ellie and I could have cared less.

Maybe for a month that it how I should choose to do my grocery shopping... maybe I could "relearn" the art of buying only what I need and can afford. It gets to be too easy sometimes to just swipe the card without truly thinking about the amount of money I just spent. Strange that a 6 year old could teach me a lesson like that.

Some Food for Thought

2011-03-15T12:27:00.000-07:00

I was reading a blog post this morning from a mother of a 3 year old boy who has cerebral palsy. It was very thought provoking and I thought that I would paraphrase what she said because it caused me as a mother to rethink what I should say about Nathan. I'm going to put this in my perspective as Nathan's mother.

When I tell people about Nathan or describe him to others, I typically mention that he has Pierre Robin, Tetralogy of Fallot, and a host of other serious birth defects. Not because this defines him, but I think it will help answer questions about him when they see he doesn't speak clearly, eat or doesn't do other things a typical three year old does. I tend to focus on the things he can't do when talking about him. The biggest reason I can come up with is because of MY OWN insecurities. I feel like if I tell people he had these birth defects up front, then we avoid any embarrassing situations. If I tell people he has had jaw surgery twice and a total of 18 surgeries in his mouth and face, I don't have to explain why he can't and doesn't want to eat. If I tell people he has these problems, I don't have to step out of my comfort zone. But if I continue telling everyone he has Pierre Robin and Tetrology of Fallot as a basic introduction, I'm skipping over the most wonderful and amazing and cheerful and energetic and happy-go-lucky little boy I've ever met. I'm still working on it, but this post has definitely challenged me to find a way to describe Nathan in a positive light, leaving out everything he "can't" do.

So here's what Nathan can do:

Nathan is the kind of brother every kid should have. When Ellie is hurt he is the first to tell us even if he was the one who caused the problem. He immediately runs to give kisses and hugs to make things all better.

Nathan is great at volunteering and saying prayers (with help) when we pray as a family. He is ALWAYS the first to volunteer.

Nathan is a great singer. He has mastered Twinkle, Twinkle Little Star, Old MacDonald, and Head, Shoulders, Knees and Toes. His articulation could be better, but he loves to express himself through music and because of this we have found this to be a great outlet to teach him both in church, school, and therapy sessions.

Nathan still has times when he needs to go to Time Out. However, he will always stay in place without kicking, screaming, or crying. He is always quick to say he was sorry for what he did.

Nathan has a great imagination and loves to play with anything. His current favorites are having the IKEA plastic forks, knives, and spoons talk to each other and to dance around the table.

Nathan loves to play catch with footballs and baseballs. He is getting much better at kicking soccer balls as well. He is developing into a normal 3 year old boy right before our eyes!

I don't introduce Elisabeth as being exceptionally stubborn and strong willed so why should I not introduce Nathan in that same positive light?

So - this is Nathan. Nathan is a typical 3 year old little boy who loves to sing, play with footballs, and is extremely kind hearted. He's the brother that every child should have. He will be a great big brother in a couple of months!

Waiting for the Bus to Come

2011-03-14T07:36:00.000-07:00

Nathan started preschool the Friday after his third birthday in January. The first day was a little hard for him, but he loves going to school now. Nebo School District started a "Baby 3" class for preschool where the new 3 year old child attends school with one of his parents on Fridays for an hour and a half. Since Nathan had the first birthday of the year, he didn't have any classmates for a month. Jake and I were very concerned that he needed to be with "model" peers and so we stated that he needed to be in preschool at least 2 days a week. I felt as if we were having to negotiate his education, but a least Nathan was able to be put in another class with other children who are eating and speaking better than he is.

Nathan's team of teachers are really nice and I am impressed with what they are doing to help him in school. I am disappointed with the feeding therapy that is being given by the speech therapist and will be asking for a referral for an occupational therapist to come and work with Nathan as well. A portion of Nathan's Individual Education Plan states that he will eat and drink so much by next year and so far the speech therapist has left the feeding completely up to me. Then she had the gall to say that she has so much time allotted to Nathan and did I want him to have more speech therapy or more feeding therapy? That's why I want another therapist... Nathan needs both equally but apparently even though its in his IEP its no big deal to her. I understand our responsibilities for working with Nathan at home. We have been working very hard eating for 3 years. That included weekly visits from the occupational therapist from early intervention, bi weekly feeding therapy from Orem Pediatric Rehab, quarterly evaluations from the Dysphagia Clinic at Primary Children's... and daily home work with Nathan. We have put so much into this and we are very invested as a family to help him. He has an opportunity to get help at school and the mama bear in me is angry that his therapist is acting the way that she is. Sigh. I am going to be speaking with Nathan's teacher this week about getting the referral so we'll see how that goes.

Nathan's very favorite part of going to school is being able to ride the bus on Thursdays. He loves to wait for it and every Thursday when I come home from work when I ask about school he tells me about riding the school bus, or as he pronounces it ("Cool Bus"). I think Elisabeth is a litle jealous that she isn't able to ride the bus to school, but when I remind her that she is able to go to school with her Dad and that Nathan doesn't she usually quiets right back down.

Crazy Hair Day

2011-03-10T07:49:00.001-08:00

Yesterday was crazy hair day at school as part of Spirit Week. Ellie and Jake have both really gotten into in the "spirit" of things. Nicole was super sweet and did Ellie's hair yesterday. It took her almost an hour to do it, but I think it turned out awesome! Jake grew out his hair really long and then he had Nicole give him a Mohawk. I cringe looking at the Mohawk because he wants to keep it till Friday. Friday at school is Decade Dress-Up. He wants to be a punk from the 1980's... only Jake!

Ellie is getting to the awkward stage of picture taking. Even when she looks at the camera, she always squints or pulls some funny face. It doesn't help either that he teeth are coming in and falling out. I hope that this stage of her doesn't last long because she is a really cute kid with a great smile when she decides to show it off!

Elisabeth's 6th Birthday

2011-03-09T14:07:00.001-08:00

Elisabeth - 1 week old

1 Year Old

2 Years Old

3 Years Old

4 Years Old

5 Years Old

I can't believe that Elisabeth is already 6 years old! Where did the time go? I vividly remember the day she was born... there was a huge snowstorm that morning and I was worried that we wouldn't make it to the hospital safely or that our families wouldn't make it either! But nothing could hold back 2 excited grandmas and they were both there.

Elisabeth was born with a big personality. Its not necessarily a bad thing - her biggest weakness is also her biggest strength in many regards. Because she is a forward thinker I believe it has also be easier for her to accept Nathan and to also help mold him into the cute little guy that he is today. She doesn't hold back with him and encourages him to eat and to play like any other normal kid. Ellie has a very strong will, but that has also has helped her do very well in school because she wants to do and be the best at everything she can.

Elisabeth at 6 Years Old:
1. Loves kindergarten and is on a D-E level of reading.
2. On the Measure of Academic Progress Test at her school tnat she recently took, she scored in the 87% nationally for her math skills.
3. Her job at home is to remind us to read scriptures nightly as a family. She is reading out of the Book of Mormon and able to read and recognize a great majority of the words.
4. She loves being in the 500 Club at school (where the student reads 500 minutes every month). It is her goal to be the first one in her class to make it every month.
5. She is VERY EXCITED to be getting a sister in a couple of months and loves to constantly remind me of how big my stomach is getting. I wish she wasn't so eager to remind me of my growing pains!
6. Her favorite food is spaghetti. The odd thing is she won't eat it with the spaghetti sauce. Just a little cheese on the top...
7. Her favorite activity is taking cooking lessons with her Grandma Ellinger. She looks forward to just spending time with her and is actually doing very well in learning how to cook. It has been the best Christmas present ever for her.
8. She is learning how to play the piano and is doing a great job.
9. She has lost 4 teeth and another 2 should be coming out in the next couple of months.
10. She loves to hang out with her friends and especially to play outside riding her bike or playing with Addison. She loves that it is almost springtime so she can be outside more.

For Elisabeth's 6th birthday we had a very low key birthday party for her. Libby, Mallory, Shawn, Kristin, and Kathleen came to celebrate with us. Grandma and Grandpa Ellinger were at a conference that weekend and weren't able to make it. We had the good ol' cake and ice cream. Kristin made Ellie's birthday cake and did a great job with it. The birthday party was held the Saturday before her birthday and so we decided that Libby and Mallory could sleep over as part of Ellie's party. The girls had such a fun time together!

On Elisabeth's actual birthday on the 15th of February we invited Grandma, Grandpa and Kathleen to come over and have dinner with us. Ellie loves salmon too and so we had salmon, asparagus and rice for dinner. Afterwards Ellie and Grandma blew out birthday candles together since they share the same birthday. Elisabeth loves that she has that in common with her Grandma.

On the day of Elisabeth's birthday party we had raspberry crystal light. Ellie loves that stuff which is why in every picture of her she has a red ring around her mouth. She can be such a silly kid sometimes!

Jake and I are grateful to have Elisabeth in our lives. She is a great kid and we couldn't imagine what life would be like without her!

Fetal Echo

2011-03-02T14:39:00.001-08:00

I went up to Riverton Hospital to see Dr. Su, one of the pediatric cardiologists for Primary Childrens. Even though the baby did not appear to have any birth defects, the perinatologist wanted a fetal echo done to verify if there would be any problems. I wasn't really worried going into it and had a feeling of peace. Sure enough the feeling of peace wasn't for naught, and our little girl will be born heart healthy. What a relief! Now I can just sit back and enjoy the swelling and normal aches and pains of being pregnant...

Nathan's 3rd Birthday - January 22nd

2011-03-02T06:55:00.001-08:00

Happy Birthday little guy! We celebrated Nathan's 3rd birthday with a very small party at our house. Nathan was very clear that he wanted a Buzz Lightyear birthday cake, so Aunt Kristin made the cake and cupcakes and we supplied the ice cream. The problem with giving Nathan a Buzz cake is that he didn't want to cut it or eat it. He did love his mint chocolate chip ice cream and had fun licking it and trying to feed himself with his own spoon. Nathan's very favorite part of the party was getting a brand new bike. I just wish that his birthday was a little closer to the warmer weather months so that he could get more use out of it.

I really didn't want Nathan's 3rd birthday to come. It brought with it the end of early intervention and the start of preschool. I will have to post some pictures of a few of Nathan's therapists that did so much to help him!

I'm really pleased with the progress that Nathan is making. He has come so far in the past three years. I just have to keep reminding myself that Nathan's Pierre Robin just adds to the normal oral aversion that many heart babies are prone to. He is making progress but typically children like Nathan need to set their own time table. Its going to be a L.O.N.G. time before Nathan no longer needs his g-tube. We just need to keep giving him lots of positive eating experiences and to work very patiently with him. I still feel very fortunate that we are just struggling with eating, frustrating as that can be sometimes. What a blessing it has been to have so much support from family, doctors, therapists, babysitters, and above all a loving Heavenly Father.

Here is Nathan's stats at 3 years old:

Weight: 29lbs 1 oz.
Height: 36 inches

My WILD Imagination and our little one...

2011-02-01T10:53:00.000-08:00

In the last 3 years my priorities have changed somewhat. Well, maybe that statement isn't entirely true, but certainly my perspective has changed. I have to admit, I would loose some sleep 2-3 times a week at night wondering about this baby. Would it be healthy? Would it be like Nathan? Would we be able to adjust as a family to meet the needs of that particular child?

We met with a perinatologist and genetics counselor today at Utah Valley Regional Medical Center. I have been told by many people that this baby would be just fine. My head believed them, but the emotional part of me couldn't get past the what ifs? I think that is a natural consequence of sitting those many months with Nathan in the hospital. 22 surgeries... my imagination had a great time running wild with the endless possibilities. Especially when the great majority have all included a stay in the newborn intensive care unit or the pediatric intensive care unit. The things you see... the people you meet... I guess I still carry around with me a small amount of post traumatic stress disorder. I had a fear of putting another child through the suffering that little Nathan has been through.

So when this little critter had the ultrasound done, it wouldn't cooperate very well. Maybe its a sign that it will be just like its sister, her way or the highway! After quite a bit of poking, prodding, and a little gentle pounding from the doctor, they finally got some ok pictures of it. There are no markers for any major birth defects. The baby does not appear to have Tetralogy of Fallot. However, the little mover and shaker wouldn't hold quite as still as the dr would have liked. So in another month I have a fetal echo at Primary Children's to make absolutely certain that its heart is ok.

What a blessing! I would have taken another child like Nathan, but I didn't know if I could have dealt with the extra stress or scheduling more dr visits and therapy visits. I guess I could have, but I just need a break!

So we should be adding a HEALTHY little girl in June. Ellie is ecstatic to say the least. Every girl should have a sister.

And now I can tell my imagination to STOP IT!

Let In Snow!!! (Except Where Are the Snow Plows?)

2010-12-21T09:21:00.000-08:00

Jake got an early Christmas present this morning... school being cancelled for today and tomorrow! He was as giddy as a school boy when he learned that he didn't have to go to work! It would have been better though if he hadn't gotten his car stuck in the driveway and had to help shovel the whole driveway this morning with Brad, Carlee, Tyler, and myself. The kids came outside too and had an absolute blast! (I think Jake and Brad were having a little too much fun too!)

This is Brad pulling Emmett up the snow in the driveway before we had everything cleared.

Brad sat on the sled while Jake pulled him down the driveway. At the bottom of our driveway is a steep slope. The guys had a fun time going down the bottom of the slope into a snow embankment.

This is Jake smiling and having sweet dreams of not shoveling snow for the next 6 weeks because of his leg surgery on Thursday. The stinker did that on purpose! I am positive of it!

Nathan liked the snow for about 10 minutes. Then he decided it was too cold and went back in the house by himself to play with his trains. (Notice Ellie and Addie in the background. They were trying to throw snowballs at Brad and Jake!)

Nathan wanted to help clear the snow so he picked up a plastic child's hoe and tried to push the snow around.

Ellie thought she was on top of the world. At least in this picture she was 3 feet taller than Jake when she stood on the snow mound.

Ellie and Addie are best buddies. They were so excited to play with each other in the snow!

Ok - so even with all of the playing Brad and Jake did get the driveway cleared. No sign of the snow plows that are supposed to clear the driveway for us! Jake and Brad kept calling themselves the "Sweaty Dudes" and are offering classes for a physical workout in our driveway each time it snows. They thought it was a pretty good take off of "Sweaty Chix Fitness" that Carlee and I like to go to!

Gingerbread Houses

2010-12-20T14:44:00.000-08:00

On December 11th we met up with our friends the Hansen's and Hamricks at the Blue Lemon to make "gourmet" gingerbread houses. The girls had such a fun time together! We hadn't seen the Hansen's since they moved away in July... Heidi and Ellie were good buddies and went to preschool together. The girls talked about school (kindergarten is a BIG deal to these two!) and babies. Lisa is due in January and us in June. We wished that they hadn't moved but totally understand the reasons for doing so!

Our class had everything necessary to build the houses. It was really interesting to see the couple who had taken their child to the class that was sitting next to us. Their house turned out beautiful! Except the little girl didn't seem to have any fun doing it since the parents did all of the work. Now, Ellie and I for the life of us could not get our house to stand. The gingerbread that was supposed to be the roof weighed too much and kept collapsing. Once we got a better roof and had some serious help from Carlee and Lisa we were on our way to a fun house building experience. It was fun to spend some girl time with Ellie. We don't get to do stuff like that very often and it meant a lot to me. Especially when she said, "Next year Mom we HAVE to do this again!". Yes, Ellie we definately HAVE TO do this again. And hopefully the Hansen's and Hamricks will be there too!

When the Inn Keeper is Your Little Brother...

2010-12-15T12:52:00.000-08:00

On December 4th the Ellinger Family had their annual Christmas party. A BIG thanks goes out to Dan and Calli for letting all of us into their home! We had a yummy dinner and then had the kids recreate the Christmas story. Its nice having the kids old enough to play the parts. Some are a little more willing than others though.

For instance, Elisabeth was SO EXCITED that she got to be Mary. Nathan on the other hand had no appreciation for the story whatsoever and DID NOT want to participate. When the adults prompted Nathan to go tell Mary and Joseph that there was no room he put the blanket on his head and walked the other direction. It wasn't until I told Nathan that he could go tell Ellie "No" that he took the blanket off and ran over to her. He firmly planted his feet on the ground and his whole body shook as he growled, "NOOOOOO ELLIE!!!" Then he walked away, picked up his blanket, and then went to sit with Grandma and her iPad. (He was really more interested in the iPad than Grandma!). Ellie just looked dumbfounded with the expression on her face that said, "I can't believe he just go away with that!"

With a performance like that I think Nathan has officially earned his title as the Inn Keeper for MANY years to come!

Libby, Mallory and Kierra were the 3 Wisemen who followed the star...

Keaton and Ellie were Joseph and Mary...

Nathan was the Inn Keeper who refused to participate until he was "prompted"...

Doesn't Ellie make a pretty cute Mary?

Transitioning from Early Intervention to Preschool

2010-11-13T15:58:00.000-08:00

I cannot believe that Nathan is almost 3. Where did the time go? We have spent the last month and a half meeting with the school district a couple of times for transitioning Nathan into their preschool program. I was so worried... worried that Nathan was doing so well and making SO MUCH progress that he wouldn't qualify for services.

Yesterday was the official testing. Nathan sat very patiently for 2 hours being tested on speech and his overall development. He was such a champ! I can say that he sat so well and worked so hard with the therapists that the testing was very accurate.

The results: Nathan has the understanding of speech of a 48 month old. (He has a need to know what is going on. I would too if I feared the doctors as much as he does!) On the flip side, his articulation puts him in the 7th percentile for his age. A plus is that we can put in feeding goals for Nathan at his IEP since Nathan's speech and eating problems are directly tied to each other. We are having his IEP with Nebo School District on January 7th. I wasn't all that impressed with his teacher over the phone, but hopefully it is because I don't know her. I'm still very nervous transitioning Nathan from Early Intervention to the school district. I'm sure things will work out, but its what I have been used to and I think sometimes that I struggle with change.

One thing that Nathan can say very clearly though when asked if he thinks the baby in my belly is a boy or a girl is "No... Nathan is the baby!". Maybe I'm not the only one who struggles with change...

Buzz Lightyear to the Rescue!!! (And Mulan too!)

2010-11-02T13:37:00.000-07:00

Nathan just ADORES Toy Story. Ever since we took him to see Toy Story 3 last summer he is constantly talking about Buzz Lightyear. Even in his sometimes garbled speech you can make out, "To finity and yond!" We bought his costume about a month and a half ago and he likes to strut his stuff in it at least 3-4 times a week. If we didn't need to get to his g-tube I'd let him wear it all of the time.

Poor Ellie! I got 1 (yes just 1) picture of her at Halloween. It was because we were at the ward trunk or treat and she was DYING to get started. We went along for about 10-15 minutes before the wind, rain, and HAIL!!! came. It was quite comicle to watch 350+ people scream and run to their cars all at the same time. Since Jake had his leg in a cast and couldn't get it wet, we decided to bag trick or treating and went home to get in our pj's and watch Jumanji with the kids. We made some yummy pumpkin cookies and popcorn and made a mess all over the place! It was super fun!

Nathan had so much fun trick or treating. He even tried to eat a couple of chocolate bars which is a big improvement over last year.

She's Pinkalicious

2010-10-20T13:09:00.000-07:00

For Halloween a local farmer donated a pumpkin to every child at the school to help with the "Reagan Reads" program. Each child was assigned to dress up their pumpkin like a book or book character. Ellie had to choose Pinkalicious. I think she did a pretty good job of helping me make the tutu and painting her face. This was a fun project for us to work on together!

Gymnastics, Staples, and Ellie

2010-10-20T07:23:00.000-07:00

Ellie is my monkey...poor kid was blessed with (cursed?) the Larson clumsiness. I swear that sometimes all she has to do is walk around the house and she'll trip for no reason. That being said you'd think she would really have struggles with balance on a bike or a balance beam. She learned to ride her bike without training wheels at age 4 and can walk across the balance beam without any help to keep her from falling. I think the difference is that she loves to do both of those things and she is really focused when she does those activities. She amazes me!

Remember how Ellie had to have her chin glued back together a while back? She was sitting on our coffee table and laughing at Nathan a week and a half ago. She wasn't watching what she was doing and slid off the back of the coffee table and the back of her head caught on the corner of my piano bench and gashed it open. She started screaming in pain and I had her turn around so I could look at her head. I placed one hand on her head to steady it and felt this wet oozy feeling on it. I took my hand off her head and looked at it to discover it was COVERED in blood. I looked frantically for the source since head wounds are always worse than they seem and sure enough she had an inch and a half gash in the back of her skull.

We gathered her up, made sure she didn't have a concussion, called Grandma, and then took her to the Instacare in Springville. They were just closing when we got there so we were instructed to take her to Provo for medical attention. It is pretty uncomfortable to see your child have staples placed in their head. She was holding onto me and digging her nails into my hands. I now know what I put Jake through last May... The biggest concern for Ellie was that she was told she couldn't go to gymnastics for the week.

Ellie is such an interesting girl. She is a ball of fire for sure!

Intermountain Healing Hearts - Walk for Healing Hearts

2010-10-19T11:32:00.000-07:00

On Sept 11, 2010 we participated in the annual Walk for Healing Hearts. I love participating in this event and look forward to it every year. To me its a celebration of life - for those that are living with and courageously fighting their congenital heart defects and for those that have lost their battle whom we honor their memories. I especially love to see all of our friends and that we get to "catch" up with each other. Its about finding the strength within each other to keep up with the kind of life that a CHD hands you - the doctors visits, the worry, the intervention... but its good to see that you're not alone.

I was so grateful that Janice, my little sister that is living in Nashville, came out over the weekend and went with us to that event. I'm glad too that Jake's family could support us again.

Nathan, Baseball and Overall Development

2010-10-19T10:28:00.000-07:00

Nathan has been fixated lately on baseball, which is strange since Jake hasn't really watched much of it this summer. He walks around the house with Jake's Boston Red Sox hat on his head and usually with a ball in his hand and a red child's bat in the other.

This is the "UH OH, Mom caught me and I'm a deadman for knocking everything all over with my bat!"

This is what Nathan usually looks like walking around the house. He is such a little ball of energy who is starting to stick up for himself a little bit more. Boy, if Ellie gets in his way she has to watch out! He starts growling at her in a deep voice saying... ELLLLLLLLLEEEEEEEEE. Then in response she justs starts laughing at him and then runs before she gets in trouble with us.

Here is his current stats at 33 months:

Weight 26lbs even (he lost 3/4 a pound last month)
Height: 34 1/2 inches
Speech: 22 month old
Gross Motor: 24 month old

Nathan is going to be tested on November 12th by Nebo School district to see if he qualifies for services that could be provided by the preschool. They do not take into account that he still does not eat orally because that does not meet an "educational" goal. To which I think that's a bunch of bunk because it will affect his academics if he goes to school in first grade and is teased for having a g-tube. We are doing all we can to help him but its only been 5 months since we have been able to really make progress with him and in many ways his oral skills are at that of a newborn. Articulation is going to be Nathan's biggest hurdle to get over in the next little while, but that is mostly due to the Pierre Robin and cleft palate.

Overall Nathan is doing awesome. Maybe someday he will be a professional ball player (just not for the Angels or the Yankees :).

Dysphagia Clinic at Primary Children's

2010-09-02T09:53:00.001-07:00

Nathan has been seen by the Dysphagia Clinic at Primary Children's since he was 5 months old. Following his open heart surgery Nathan had a very difficult time for a couple of months having too much in his stomach and though he was drinking about an ounce with his cleft palate nurser (bottle), he completely quit and wouldn't have anything to do with oral stimulation. He was refluxing and throwing up several times a day through his nissen and he was in a lot of pain during feedings.

Dr. Molly O'Gorman (Dr. Molly as she calls herself), took Nathan right under her wing. She has been very frank with us about Nathan's problems, but what I really love about her is that she is a mother. She speaks to me from a Mother to Mother standpoint and makes me feel informed and empowered about Nathan's medical decisions. She is a rare jewel of a doctor and I hold her in the same high regards as Dr. Park, Nathan's ENT.

From a g-tube standpoint Nathan is doing quite well. We are going to try to change his G-tube brand to see if it helps the leakage/drainage problem we have been having. With Nathan not having to work so hard to breathe and his heart function getting better they actually had to REDUCE his calories! He is gaining a little too well for his heart to keep up with the work. He is now taking 5 cans of Nutren Jr. a day which totals to be 1200 calories a day. Nathan is weighing in a a whopping 26 lbs and is just shy of 35 inches tall. That puts him in the 5 percentile for his weight and 8 percentile for his height. His overall weight/height ratio (which is what the doctors actually look at to determine correct weight for the child) is 98%. That is Nathan's BEST EVER figure!)

From an eating standpoint... well... yeah. Nathan did chomp down on celery and peaches for Helene (the feeding therapist). He also put Nutella in his mouth and swallowed a little bit. We had considered sending Nathan to Kennedy Krieger or Hershey Penn State for intensive feeding therapy. Both the doctors cautioned that we would not see the results that we hope for because Nathan's feeding problem does not stem from a mental/emotional disorder. It is from SERIOUS physical impairments. She cannot recall a child in her clinic who has had 18 operations alone in their facial area. Only 1 other child at Primary's has had jaw surgery twice for Nathan's diagnosis. They are VERY IMPRESSED with the feeding abilities that Nathan has and pointed out that the muscles we use to eat with have been cut through MANY times on Nathan and they are extremely weak. Asking him to go through that kind of therapy would be like asking me to run a marathon a month after having a c-section. I wouldn't ask it of myself and so I shouldn't expect it of my child. Helene gave some good feeding ideas and then said that Nathan needs to be seen 1x per week from both Early Intervention and the Orem Pediatric Rehab Center.

I wish that Nathan didn't have this G-tube and would just eat. The lessons we've learned as a family in regards to patience is phenomenal! I am grateful, though, that for the first time in 31 months Nathan is STABLE and no more immediate surgical intervention is required. We are very fortunate that feeding is our big issue.

Dr. Molly and Nathan

Helene Taylor (Feeding Therapist) and Nathan

Gotta love the chubby cheeks!

Nathan LOVES his Nacho Cheese Doritos. He won't eat them, but he loves to lick them. He asks for his CHIPS all of the time!

Its That Time of Year Again

2010-09-01T07:51:00.000-07:00

Growing up my mother made it a point to can every item in our garden that she possibly could. As a kid I HATED IT. Well, except for the part of eating the yummy bottled peaches. I disliked snapping beans, HATED bottling tomatoes, and the worst was making grape juice. As a mother now I see why my mom took the time to do those things. It was definitely cheaper to can the items from your garden than to buy them in the store... but there were even more important lessons that she was teaching us.

1. The effort of what you put into something is exactly what you get out of it. We worked hard on keeping that garden producing and it was satisfying seeing what we could do. I remember so many late nights with Janice taking our "water irrigation turn" at 12:00 or 2:00 in the morning. I have fond memories of that time spent with Janice and my brother Brian.

2. We learned self reliance.

3. I am convinced now that Mom could have easily done a better job than us if she had just done the work of bottling by herself. I believe that not only did she have us help for the reasons listed above, but because it was a way to spend some quality time with her where we could just talk about whatever and she knew that she had our attention for a 4-6 hour time span.

Julie Beck couldn't have said it better in her Mother's Who Know talk:

Mothers Who Know Are Nurturers
Mothers who know are nurturers. This is their special assignment and role under the plan of happiness.5 To nurture means to cultivate, care for, and make grow. Therefore, mothers who know create a climate for spiritual and temporal growth in their homes. Another word for nurturing is homemaking. Homemaking includes cooking, washing clothes and dishes, and keeping an orderly home. Home is where women have the most power and influence; therefore, Latter-day Saint women should be the best homemakers in the world. Working beside children in homemaking tasks creates opportunities to teach and model qualities children should emulate. Nurturing mothers are knowledgeable, but all the education women attain will avail them nothing if they do not have the skill to make a home that creates a climate for spiritual growth. Growth happens best in a "house of order," and women should pattern their homes after the Lord's house (see D&C 109). Nurturing requires organization, patience, love, and work. Helping growth occur through nurturing is truly a powerful and influential role bestowed on women.

Mothers Who Know Are Teachers
Mothers who know are always teachers. Since they are not babysitters, they are never off duty. A well-taught friend told me that he did not learn anything at church that he had not already learned at home. His parents used family scripture study, prayer, family home evening, mealtimes, and other gatherings to teach. Think of the power of our future missionary force if mothers considered their homes as a pre–missionary training center. Then the doctrines of the gospel taught in the MTC would be a review and not a revelation. That is influence; that is power.

I know that it was very difficult for my mother to raise 2 daughters (after dealing with 7 other children) by herself after my dad passed away. But she kept at it with faith and diligence. I am selfish in wanting my mom to be here still to keep teaching me, but I know that she is happy with her eternal sweetheart and my sister.

I want to be the kind of mom that I had. The summer after Elisabeth was born mom "retaught" me the art of canning. Since then Jake and I have made it a tradition every year to make jam, bottle tomatoes, bottle spaghetti sauce, bottle salsa... you name it and we like to try it. If I get brave enough I might even make apple butter with the help of my best friend Tammy. (This is your warning Tammy!)

So here is my first attempt at teaching Ellie how to make spaghetti sauce. So far in the past week we have made 41 bottles of spaghetti sauce. I think this weekend we will be brave and do salsa...

Ellie had such a good time. She is a great helper in the kitchen when it comes to cooking. She is so much like her dad... good cook but when its time to clean up she takes off running!

Only Ellie....

2010-09-01T07:26:00.000-07:00

Though Elisabeth just adores Princess things such as the jewelry, stories, and bracelets... I believe that she is really more of a Tom Boy at heart. This summer she has been practicing riding her bike without holding on with her hands (she ditched the training wheels when she was 4!), doing "tricks" on her scooter, and practicing jumping/diving in the swimming pool. Elisabeth has taken 3 sessions of swimming this summer and is proficient at swimming by herself across the swimming pool at our clubhouse. She is a pretty daring kid who isn't afraid to have some good ol' fashioned fun.

Last Thursday after swimming lessons our niece Halee took her swimming at the clubhouse. Ellie was dying to practice jumping in the swimming pool and then after floating to the top she would swim across the pool. She ran to jump in the pool, lost her footing, and cut her chin open. Blood started gushing everywhere and Halee freaked out!

We took Elisabeth to the pediatrician who decided that because the cut was so straight that he would prefer to glue her chin back together rather than to stitch it back together. She was still freaking out quite a bit and so Jake bribed her with some Cold Stone ice cream. That seemed to help her quite a bit!

This is the second time Ellie has cut herself on her face. We know that with some of the stunts that she pulls it will only be a matter of time before she breaks a bone!

The pictures below were taken after her chin had been glued back together. I couldn't stomach the "before" pictures so I didn't post them!

First Day of Kindergarten

2010-08-23T12:00:00.001-07:00

Today was Elisabeth's first day of Kindergarten. She is going to Reagan Academy and has Mrs. Miller as her teacher. The school has a uniform policy (hence why she looks a little more formal than a normal kid). She changed her mind 3 different times yesterday as to what she was going to wear and which bow she wanted in her hair. The school did a 3 week stint of "pre-kindergarten" where the kids went to school without the rest of the other grades there. Ellie did well with that and realized that school wouldn't be that scary!

It seems a little wierd to me to be sending her off to school. Ellie is my first experience with what school is going to be like from a parent's perspective. Up until now I got to choose her friends and the people she surrounded herself with. Now.... I just hope that she can make friends with GOOD kids - like the friends that I had growing up. I'm just glad that Jake works down the hall as the middle school science teacher.

Maybe the reality isn't that I'm scared for what awaits Ellie as for what awaits me as she grows up. (And possibly that 30 is a little over 3 months away!).

(She came out a little (big?) ball of fire at 9lbs 11 oz kicking and screaming and letting her presence be known). She's no longer a baby, but man - she likes to make her presence known still!

Goodbye...

2010-08-09T14:25:00.000-07:00

And Good Riddance!!!

Nathan passed his sleep study test with flying colors!!! He does hypo ventilate, but the obstruction is gone and the sleep doctor that read and interpreted the test said that he felt that no further surgical intervention was needed at this time.

Yeah!!!!

The pulmonologist did say that anytime Nathan had a surgery he should be very carefully monitored as his airway is not normal and is more prone to collapse. Hopefully he won't need any more surgical intervention for other body parts for quite some time.

Tonight we are going to celebrate!

Another Sleep Study...

2010-07-29T14:38:00.000-07:00

The sad thing is that the picture of Nathan tells a little too much about how he knew this was his 4th sleep study! Its the "I can't believe you are putting me through this again!" putout look! He was such a trooper getting the probes on. He didn't fight it or anything. He just sat and played with Woody from Toy Story and watched "Cars".

Last night I took Nathan up to Primary Children's for hopefully our last sleep study in a while. This study was to check the status of his severe obstructive sleep apnea post mandibular distraction.

I hate that they call it "sleep study". Neither one of us slept great... but the good news is that Nathan did not need oxygen at all last night! That is such a big step forward for this little guy. They said his oxygen sats were around 88-90 which is awesome for Nathan at night! If a child drops below 85 then they are required to put oxygen on him. I hope that this is an indication of good things to come as we won't find out the results of the study for another 2-3 weeks. I have an appointment with Dr. Park on August 25th to discuss the results if we don't recieve a phone call from him before then.

Wish us luck that the jaw problem is over with for a while! With the jaw problems out of the way it would do a world of wonder for his heart and particularly his pulmonary hypertension.

The Museum of Science and Industry

2010-07-11T15:46:00.000-07:00

The day after Jake came to Chicago, we decided to go see the Museum of Science and Industry. We thought the science museum in Seattle was awesome; this place made the one in Seattle look like it was put together by amateurs. Jake, the textbook version of what a science teacher should be, was in seventh heaven!

There were so many things to do and see in this place. My favorites were the sections on the human body and the weather which included the transfer of energy. The human body section should what the body parts looked like without the skin and muscles. It also had a human heart that had been donated. There was a section that showed the growth of babies in the mother's womb. All of the babies had passed away at different gestational ages and had been preserved for people to see what forms at what stage during a pregnancy. It was very interesting to see.

My other favorite part was the wing specializing in weather. They had a movie on how lightening is created and then had a demonstration on the ceiling above us. Ellie and Nathan LOVED it. We could have spent days at that place. We visited this place on the first Thursday we were there and had previously decided that we would go to Hannibal and Nauvoo on the weekend. If we ever got to go to Chicago again, I would make that the top priority of places to see.

Tap, Tap Tap.......

2010-07-11T15:22:00.000-07:00

Does this blog actually still function?

On some level it does. I should do better, but oh well.

For work I had to spend 2 weeks in June auditing companies in Chicago. Jake and I figured that he would not enjoy taking care of the kids for 2 weeks by himself so we opted to make this our "family vacation" for the year. We couldn't afford to fly, so yes... Kathleen (Jake's sister) and I braved the roads and the kids for a 2 1/2 day drive I hope not to repeat for quite some time. The kids were actually very good travelers, but 2 days in a car can be LONG. Jake's sister came out with us to help tend the kids because Jake's work decided that he would have to attend a work retreat for the first few days I was supposed to spend working in Chicago.

Before Jake flew out from Utah to join us, Kath and I decided we had to do a few fun things that Jake wouldn't want to do. The main event was the American Girls Doll Place. Wow! The dolls were incredible! I never had one when I was a girl, but I wish that I had. I bought Ellie the friend of Kit Kitredge (Ruthie) I believe. She has loved that doll and taken exceptional care of her since bringing her home. The store also had a doll salon, a doll hospital, and room for tea parties. It was AMAZING! Ellie has named her doll Emma Lynn Ellinger so it would be the same initials as her.

After the American Girl store we hopped on a bus and visited the Adler Planetarium. It is located right on the shore to the lake. It had such a fun children's area to play in and the kids had a great time. Who knows? Maybe someday one of them will be an astronaut or fly to the moon!

Endocrinology, Cardiology and Genetics

2010-05-05T07:28:00.000-07:00

(I just love Dr. Cowley!)

(Nathan having his EKG)

We have had such a busy April at our house with the kids and their appointments!

April 7 - Dysphagia Clinic
April 8 - Nathan's distractor started coming out of his face
April 12 - Nathan's surgery to get his distractors out for good!
April 13 - Orem Pediatric Rehab feeding therapy for Nathan
April 14 - Endocrinology appt and Cardiology appt
April 15 - Ellie presurgery class at PCMC
April 20 - Genetics appt with Dr. Viskochil
April 22 - Ellie's tonsilectomy
April 26 - Nathan IFSP - Early Intervention, speech therapy, occupational therapy
April 28 - Nathan's home health care nurse comes for assessment and to check for overall growth and development.

Plus - every Friday we have the early intervention feeding therapist come and work with Nathan on eating.

My goal is 1 month without a doctor appt for anyone. JUST ONE MONTH!

Nathan was seen by the endocrinologist at Primary's to check for the way Nathan's body processes calcium and vitamins since he has had two cleft palate prosthesis fall out as well as both sides of the jaw distractors from this last surgery. All they came back with is that Nathan is Nathan and he is only low in Vitamin D, but not insufficient enough to cause that severe of a problem. I'll take that over Ricketts any day.

However, before they could rule Ricketts out that had to have radiology perform a full skeletal x-ray. I will never complain over a chest x-ray again. Nathan screamed at the top of his lungs for 57 minutes straight. I felt so bad for him!

Our cardiology appointment was a couple of minutes later and so we had the EKG done and went through more thoroughly the results of the last echo.

The results of the echo showed:

1. An increase in the size of the left ventricle.
2. Triscuspid valve leakage - moderate
3. Mitral valve leakage - mild
4. Pulmonary Hypertension
5. VSD patch shows mild leakage
6. Right overriding aortic arch
7. Severe pulmonary insufficiency

The happy news is that with the tricuspid valve leaking the cardiologist is able to get a pretty good estimate of the pressures in Nathan's heart without having to send him in for a heart cath. I was under the impression that Nathan's pulmonary valve was present but had just been widened to allow for more blood flow through the pulmonary arteries. Dr. Cowley said he was surprised that Nathan didn't need the BT shunt. When the surgeon got in to do the "repair" he actually had to cut the valve out for Nathan's blood to have adequate flow to get through to the lungs. There is some trace of the valve tissue there, but no valve that is opening and closing. This means that Nathan is not a candidate for the pulmonary valve replacements that are being done by going through the groin. Hopefully as time goes on and more is known about those valve replacements that Nathan could take that route. I guess that the best part of Nathan being so little and slow to gain weight is that it allows for more time until he needs to have that valve replaced. Dr. Cowley also indicated that in early adulthood Nathan will likely need something done about his tricupsid valve.

Best news is that Nathan is as heart healthy at this point as he is ever going to get. That is music to my ears!

I also took Nathan on the 20th of April to see Dr. Viskochil, Geneticist. With Nathan's very long, complicated medical history he is very surprised that Nathan is doing as well as he is. They are still unable to name a syndrome that Nathan has because of how smart that little boy is. He has a lot of birth defects and nuances about him that make him his own special little person. They have no idea of the cause of these defects and can only give a "statistical best guess" about the probability of having another child like Nathan. Their guess is 3-25% chance. That is just a guess though because they cannot name where the deletion came on what chromosome. We really are only interested in finding a syndrome so that we can be proactive in Nathan's medical care and to help with any learning disabilities that may be known to present itself in one of those syndromes.

I am very grateful that Nathan is doing so well. We have a long way to go, but look at how far this child has come!

Ellie's Tonsilectomy 04/22/2010

2010-05-03T15:50:00.000-07:00

What would the Ellinger Family be known for if it wasn't for surgery? So - Ellie got to join in too. Poor kid had tonsils that were equal to Nathan's and she was having a hard time breathing at night. Instead of opting to try to help it with some meds, we opted just to have the surgery and be done. We've maxed our out of pocket this year (thanks Jake & Nathan!) and so we felt it was a good decision to have it done for Ellie.

She was such a trooper about it! She DID NOT WANT TO GET DRESSED! Grandma and I had to coax her into her clothes, but after that she seemed to do ok all things considered. Dr. Park was so gentle with her and the anesthesiologist was more than happy to give her some versed (the happy forget it all drug!). Ellie was so mesmerized by the toys that they gave her that it didn't bother her to go into surgery.

She did really well the first two days after surgery. Then day 3-9 were just AWFUL, especially at night. Now she is as good as new. We're proud of how brave she was! As a side note - she has only had 1 accident at night after having her tonsils out. That's amazing for that girl!

So yes, EVERY Ellinger (Jake, Ellie, Nathan, and myself) has had surgery in the last year. We should probably find a new way to bond as a family.

Going Going Gone!

2010-04-28T15:37:00.000-07:00

The distractors have come off and now Nathan has REALLY taken off! Nathan's distractors were removed on April 12th. The weekend before they were taken out, the distractor that wasn't replaced on the 9th of March started dangling from Nathan's cheek like the first set! I was in California at a wedding when that happened and so it was really great of Jake to sit and hold Nathan all weekend and to watch Mickey Mouse Clubhouse with him to keep him from having another set completely fall out.

Jake and I are really pleased at Nathan's progress and recovery from this. It was a big surgery for such a little guy to go through, but as promised in a blessing from an apostle "he will have vigor and energy to complete his mission in life". He has truly started to show that. He was such a happy little camper after surgery to get those out! He just kept signing and saying "All gone, all gone!"

Yes Nathan, THEY ARE ALL GONE!!!

CHD Awareness Quilt Project

2010-03-30T06:56:00.000-07:00

"The Congenital Heart Defect Awareness Quilt Project was created to promote greater public awareness of Congenital Heart Defects (CHD), while honoring the strength, courage, and commitment of all those born with a CHD and their families."

"The Congenital Heart Defect Awareness Quilts are a series of quilts, with each quilt honoring 42 individuals with CHD. The quilts are being constructed of heart blocks, with each block being dedicated to a child or adult effected by Congenital Heart Defects."

After Nathan's open heart surgery in June 2008 I had was given the information to their website: CHD Quilt

I submitted it and hadn't thought anything about it until an email came from them this morning with Nathan's completed block! It fits him so perfectly. I love the BYU helmet because of Nathan's obsession for his BYU blanket that he packs around with him like Linus (the Peanuts character).

What a great way to honor those with congenital heart defects!

What Goes Up Must Come Down...

2010-03-09T14:31:00.000-08:00

And what goes in Nathan must come out...

On Nathan's timetable.

Which is why we are again at Primary Children's in the waiting room by the OR having operation number 20.

Oh Nathan, why did you have to pull through this last surgery so well and with such a zest for life and energy that you have never had before? Why did you have to be a normal 2 year old and do a face plant into the carpet last Tuesday? Were you just trying to prove to the ENT's that you are the boss? Or did you know that this has never happened to a child under all of the current ENT's care where they have to replace the whole distractor? Only 2x prior in Dr. Muntz's memory has a child had to have a distractor replaced and these were only the top pins. Once on a newborn and once on a 7 year old. You have again outdown them all!

I just wish that you weren't so gosh darn happy about it!

What do Marie Osmond and Nathan have in common?

2010-02-28T06:39:00.000-08:00

The contents of Nathan's stomach. (And no, I didn't get a picture of this one!)

On Tuesday the Children's Miracle Network was doing a fund raiser through IHOP where IHOP donated free pancakes that day and then "donations" could be accepted. Marie Osmond is on of the spokespersons for the foundation and so Tuesday afternoon she popped her head into our room and asked if we'd like a visitor. Nathan hadn't been doing particularly well with his feedings that day and was having lots of retching problems. Nathan was sitting on my lap when Marie came in the room. She was very happy, (SKINNY), and very personable. She chit-chatted about Donny winning "Dancing With the Stars" and not her. She also brought in a blanket and asked Nathan if he wanted it. Clear as day Nathan retorted a clear "No" out of his mouth. I guess not many people say no to Marie and so she was a little taken back and passed the blanket to give it to me instead. I put the blanket underneath Nathan's crib when Nathan started retching badly. His sats started dropping and his heart rate shot up into the 180's. The nurse was watching Nathan outside of the room as I pulled out the g-tube syringe to vent him. Before I could unclasp the g-tube clamp Nathan started throwing up on me. With his nissen, this is a very unusual occurrence to have so much force as to be able to do that. When the clamp was undone, Nathan's stomach had so much pressure that the milk, bile, and mucus in Nathan's tummy flew out of the g-tube and syringe like someone shooting a water gun. Marie was right in the line of fire.

The nurses came running in to help me and Marie backed out of the way to the door. "Um, I think you're a little busy at the moment. I'll come back later" was what came out of her mouth. The truth is she didn't return and I couldn't blame her! The nurses at the nursing station were laughing about it as soon as she left the pod we were on.

Does Nathan know how to leave a strong impression or what?

Anyone up for a game of chubby bunny?

2010-02-22T08:49:00.000-08:00

A mother should never cringe after looking at their child, but oh, Nathan's face looks so painful! He is a much better sport about it than I would be. I know this for sure since I was not a very good patient last March when I had my own jaw surgery!

Yesterday (Sunday) was a much better day overall for Nathan. We brought him a new Mickey Mouse Clubhouse DVD to watch and he was SO EXCITED to sit and view it. He stood up in his crib and was trying to hold onto the crib bars and dance a little! Overall you can tell he's still pretty miserable, but he's such a trooper.

He would have done even better yesterday if the nurse hadn't forgotten his afternoon pain medication. This is my biggest complaint about having a hospital too full. The nurses are trying to do more than what they should have to be. Nathan's nurses weren't just sitting around the station chit chatting with each other. They were bustling around. Since Jake and I slept in a little yesterday we didn't get to the hospital till late morning. We watched Mickey and then decided to have Nathan get up and move a little bit. We got a wagon and took him to the Forever Young Zone (the playroom for inpatients at the hospital). He loved every minute of it till the pain hit him like a train. He was sitting there and all of a sudden he started screaming and crying. We hurried and took him back to the room to discover he had gone almost 7 hours without pain meds. Oh, I miss the PICU. There's a certain level of comfort there knowing that the kids are being watched like hawks and that pain management isn't overlooked. I probably feel way too secure in the PICU, but it broke my heart to see Nathan hurting like that and not being able to communicate how he was feeling other than crying.

The distraction (the moving of the pins to break his jaw and move it forward) starts today. Ugh, poor little guy!

19 Surgeries and Counting...

2010-02-19T15:48:00.000-08:00

No one should ever have to go through this many surgeries in their life, especially for someone only 24 months old. Nathan is sure one tough little guy!

Yesterday afternoon Nathan had his second jaw distraction. I've been told by the ENT that this has only happened 1 other time in the last 20 or so years here at Primary Children's. The "expert" of these surgeries in Minnesota has only seen a second surgery a dozen or so times in his practice. The surgery lasted about 5 hours and Nathan faired very well during the surgery. He was taken to the Pediatric Intensive Care Unit for observation and more controlled pain management. Nathan's airway showed some anomalies, but nothing that could be fixed. With all of Nathan's airway issues, he has to be watched very carefully for the first 24 hours to make sure that his body is ok and that his lungs don't fill with fluid as that has happened many times in the past.

Primary Children's serves the intermountain west. Unfortunately although they have expanded another 14 beds in the PICU, that is not nearly enough to service 5 states! They had overbooked the PICU by 4 children with 7 more admits coming through the doors. Since Nathan was considered one of the more stable kids, they sent him down to the children's surgical unit. Don't get me wrong, I'm ecstatic that he is doing so well.... but his pain management was more controlled in the PICU than on the surgical unit floor. The surgical unit is also double booked because of all of the RSV kids and H1N1 kids. These rooms are so little and having 2 kids in them just doesn't work. The surgical unit nurses are running all over the place because they have 5 kids each to work with. Its just not a happy situation for anyone. Nurses are stressed, parents are wanting privacy and more attention for their kids, and the kids are feeding off of each other's crying. What a day!

Nathan doesn't want anyone to touch him except Mom. Even then for a while this morning he didn't want even me to hold him. He is being VERY PROTECTIVE of his face. I can't blame him. I'm sure it is awful! He has slept most of the afternoon and seems to generally be a little more peaceful. He's having a hard time finding a good spot to rest his head. As a baby the distractors were closer to his face and the pins were not so prominent. This should be very interesting for the next two months!

2 days down.... at least 10-12 to go!

A Party Fit for a Princess.... Happy 5th Birthday Ellie!

2010-02-16T12:33:00.000-08:00

For Ellie's 5th birthday we decided to throw her a princess birthday party, complete with fully dressed princesses, an updo, and a tea party. We invited 9 little girls to come to the party dressed in their princess best. Every child invited came to the party!

We began with Grandma reading "Sleeping Beauty" to the the princesses as they awaited each other's royal arrivals. When it was time to go, we buckled all of the girls in their booster seats and took them to MATC college in Spanish Fork. Our babysitter, Nicole, is going to school there at night. The school has a program for their girls to gain experience and so they charge $5.00 for a birthday party per child to have an updo, small makeup done, and their nails painted. The girls were in 7th heaven being made up to look like little princesses! All of the girls looked so adorable!

After we were done at the school, we came home to play a game and to have a small tea party. I bought green and pink bread from the Provo Bakery and the girls had chicken salad sandwhiches (or peanut butter), along with pink lemonade, pink cupcakes and ice cream.

Following that Ellie opened all of her birthday presents. This year I made a Heritage Maker's book for her. It included pictures of Ellie from birth to age 5. She has been looking at it every day and asking us more stories about when she was younger. I love that she likes it so much!

This was a fun party and I appreciated everybody's help with keeping things under control!

When You Meet an Apostle...

2010-01-20T07:49:00.000-08:00

I have to start out by saying I feel like Nephi in the Book of Mormon..."having been born of goodly parents". While I have the utmost respect and love for both of my parents, I have also been blessed with very kind and welcoming in-laws. Since both of my parents have passed away I view Jake's parents as if they were my own. From the time that Jake and I were married they have treated me like one of their daughters.

Jake's mother has been especially concerned for Nathan's welfare following this decision that was thrown upon us. Her good friend from college, Pam, is Elder Todd Christopherson's secretary. Patsy contacted her friend and told her of Nathan's plight. After several back and forth emails, last Tuesday afternoon we received a call for an invitation to bring Nathan up to Elder Christopherson on Wednesday at 4:00 for a blessing.

While we were waiting in Elder Christopherson's office, Nathan started to get a little anxious. Elder Christopherson reached into a cabinet and pulled out a Phillipino jeepney collector car that he had picked up in his travels. He let Nathan play with it while we told him of Nathan's problems and what he would be facing in the future. Nathan adored the car and made many sounds for it while he was rolling it across the furniture and the floor. Now, Nathan has had many blessings in the past from health care professionals, his father and grandfather, and from his uncles. Most of the time Nathan is crying or fidgeting or pushing away from the men. This time, Nathan quietly sat on my lap stroking the car and didn't peep a sound through a very long and sacred blessing. I won't go into the details of what was said, but after a discussion on faith with my mother in law, I have learned that I need to open my heart more and to have faith in what was spoken of. At the end of the blessing I took the car from Nathan and placed it on the desk in front of us. Nathan let out this whimper cry that would pull at any one's heart strings. Elder Christopherson wasn't anymore immune to those cries than his parents. He told us that Nathan could keep the car if he would like. I tried to decline but he said that he would be going back there someday and that he would get another one.

This was an experience that I will never forget. What an increase this has been for my testimony. The way I felt that evening gave me a glimpse into what the parents must have felt in the Book of Mormon in 3rd Nephi when the Savior took the children and blessed them. I am grateful for the love and compassion that was shown to my family on that day.

We have chosen to have Nathan's jaw distracted again on Feb. 18th. He will be hospitalized for 2-4 weeks depending on how his little body handles the surgery. Nathan had a CT scan on his head last Wednesday before the blessing and the doctors found that his bones are dense enough to hold the distractors again. They also discovered a cyst in Nathan's mandible (bone)that is causing bone deterioration and could cause a tear in his cleft repair. Nathan will have that removed at the same time he is having the jaw surgery.

This Friday, January 22nd, Nathan is going to hit another HUGE milestone in his life. Our little baby is turning 2! I will post more about Nathan then.

The Very Long Overdue Post

2009-12-24T06:07:00.000-08:00

2 Months is a decent amount of time to ignore a blog. I usually try to work on it during a break at work or something, but my heart really hasn't been into blogging so it hasn't been a priority.

Hmm, it’s been several months since I’ve written anything and I apologize! Since I honestly cannot remember where I left off in the story, I’ll start back in August. Jake found out that he had an osteochondroma is his right femur. He had surgery on it to have it removed on September 30th and spent about 3 days in the hospital. He hobbled around on crutches for another 4 weeks and was unable to lift the kids or to even bare much weight on his leg. We were so grateful that after pathology examined the tumor it was determined to be benign. Nathan had a doctor’s appointment on October 13th with the general pediatric surgeon about his hernia that he has had in his esophagus for the last year. We were read the reports from his testing in August and the surgeon decided that the hernia had gotten so large that it was posing a substantial risk of tearing a hole in the esophagus. That appointment was on a Tuesday and Nathan was in surgery the following Monday which was 2 ½ weeks after Jake’s bone tumor surgery. I’ve never really complained much about our lives being thrown into such chaos these last 2 years, but I cried when the doctor told me that it had to be done to Nathan and that Jake would be zero help to me.
Joey, I’m sure that you haven’t always thought of Janice as being the nicest of people, but she really came through for me. When she found out about my situation she called her mother in law to come watch her kids for 5 days and then bought a plane ticket to come home and help me. She stayed at the hospital with me one day and then played with Ellie at home and took on the role of Martha Stewart in deep cleaning and organizing my house from the chaos. Nathan was a little trooper and only had to stay in the ICU for 1 day and then another 3 days to be watched for the pain and breathing issues.

I wish that I could say that his hernia was the last of his surgical issues, but it’s not. A sedated echo was performed on Nathan during that surgery to view his heart. This was done because another sleep study was done on him in September and the report showed his severe obstructive sleep apnea worse than this time last year. The echo came back and said that Nathan is not getting enough air into his lungs and he has developed pulmonary hypertension. This means that the pressure of the flow of blood from the heart to lungs is too strong. This in turn has made his original heart defect, Tetralogy of Fallot, more serious. The right ventricle is already extremely enlarged and aged on these children. After the first open heart surgery the mechanics of the heart are changed such that the right ventricle will begin to get smaller and the muscles of the heart in that area will start to relax. The echo showed that ventricle to be getting bigger and that the tricuspid valve has a moderate leak and the mitral valve has a mild leak. These 2 valves were not included in the original heart defect. The only valve in Nathan’s heart that is functioning properly is the aortic valve. However, it is not even in the correct anatomical position in the heart. The pressures in his heart are so high that he is burning calories like crazy since the heart is working so hard to function. Nathan has achieved his all time high weight of 21 lbs 2 oz! The dietitian at Primary’s has increased the fat content in his food again to make up for all of the extra work that his body is doing. He is getting fed 40 oz of milk every day and getting 1500 calories. Each ounce of milk Nathan gets has 37.5 calories in it. To put that it perspective whole milk has 19 calories in every ounce you drink. I wish I could eat all the fat I wanted and not gain weight! We need to speak with cardiology to know for sure what this means as far as more heart surgeries and when, but the main problem is the obstruction of Nathan’s airway. Several doctors have voiced the opinion that Nathan should have a trachea placed in his throat to which Jake and I have said ABSOLUTELY NOT. We saw Nathan’s ENT (Dr. Park) on December 18th following a special MRI that views the airway. Nathan's tongue is still a significant problem in blocking his airway. We were given three surgical options and told to get back with Dr. Park by the first part of January.

1). Trachea (He would keep this in his throat for 8-10 years till he grows out of it)
2). Jaw surgery (Distractors and weeks back in the hospital followed by 8 weeks of wearing the distractors till the bone is strong enough)
3). Lip Tongue Adhesion(Sewing the tongue forward and down to his mouth so it is cannot move. This would limit speech and eating and would be for 5-10 years.)

We are leaning towards the jaw being distracted and brought forward again. Our ward will be having a fast for Nathan on January 3rd specifically that we can make the right decision for him and that he will be able to endure the decision and be ok. It was hard when he was a baby, but we just can’t deal with that again. I cringe at the thought.

Even with all of that, Nathan is the sweetest little boy. He loves to play cars, to be read to, and to be cuddled with his BYU blanket in tote. He is very smart with a language comprehension of a 2 ½ year old. I know that really isn’t that far ahead of his age, but after spending so much time in the hospital and recovering from surgeries that it huge for him. He is signing on a consistent basis 17 -18 signs. He has had a few temper tantrums, but being able to communicate with us has helped a great deal. He is even starting to take small sips of water and his milk from a sippy cup. He hasn’t been able to drink more than an ounce over a half an hour or so, but it is progress. He has finally developed separation anxiety and boy does he have it bad! I can’t even walk up to the podium in Sacrament meeting to conduct the music without him screaming and crying at the top of his lungs. I feel grateful though for those screams because another one of our heart buddies lost his battle the day after Thanksgiving. His mother wrote on her blog:

As Dallin H. Oaks said, "When we give thanks in all things, we see hardships and adversities in the context of the purpose of life. We are sent here to be tested. There must be opposition in all things. We are meant to learn and grow through that opposition, through meeting our challenges, and through teaching others to do the same."

I love the strong advice that Dallin H. Oaks offers. He states that "we should thank God for our adversities and pray for guidance in meeting them. Through that attitude and through our faith and obedience, we will realize the promises God has given us. It is all part of the plan." He also reminds us that "God offers us opportunities for blessings and blesses us through our own adversities and the adversities of others, we can understand why He has commanded us again and again to “thank the Lord thy God in all things” (D&C 59:7).

I haven’t yet figured out why so many babies similar to Nathan have far more serious developmental delays or diagnosed syndromes that are manifested in Nathan and yet are not conclusive as to why he doesn’t have more profound problems. I don’t understand why some babies like him are allowed to live only a short time with their parents and why he is still with us. He is doing so well that people who don’t know him have no idea what is going on inside his body because he is such a happy adjusted toddler. He will have serious speech and feeding issues, but if he can take it in stride, so can we as his parents. I’ve learned that we can do our best as his earthly parents but ultimately it falls to our Heavenly Father to meet his needs if we but will just ask.

Ellie is still being herself. She decided she didn’t need to wait until she could go to school to learn to cut hair and took a pair of scissors to Nathan and cut down to the scalp. He’s such a happy kid that he just let her. I cried and realized that children have two parents to care for them in case one has a nervous breakdown! Ellie told me she wanted her hair cut and so Amy did a great job and gave her a cute little A-line bob. I’ve had MANY compliments of how great it looks on her. Plus, Amy has convinced her that only Amy gets to cut hair and not Ellie. Ellie spends the majority of her days running circles around the babysitter and pestering her little brother. We’re grateful for preschool so that for 6 hours a week she is getting that extra help in putting her attention where it should be.

We’ve started a new Christmas tradition this year. We bought the book “The Elf on the Shelf”. It comes with an elf, but the elf stays at the house during the day to watch the kids and then goes to Santa at night to report. Every night the elf comes back to the house but in a different spot. It’s been fun for Ellie to go and find the elf. The elf also leaves elf “poop” of white marshmallows behind when she has done something well. We are having a good time with it and are anxious for Santa to come. Hopefully he will bring tickets to Disneyland that Ellie is desperately asking for .

After Christmas we are going to my brother’s house in California. We have been working on genealogy and have discovered that my dad and his brothers and sisters have been sealed to their dad’s second wife and not their birth mother. Not much is known about my Grandma Larson since she was adopted and died in childbirth in her early 30’s. When we go to California we will be going to the temple with Bill and his wife to seal my dad to his mom. It will be fun to do temple work that hits so close to home.

As for myself, I just plug away at work and do my best to be a mom to Ellie and Nathan. Oddly enough in all of this stress Jake and I have found that our relationship is stronger than ever before. I have been working really hard to lose weight and am starting to see some good results. Liz Rosenbaum has become a personal trainer and so I have been going to her 2x a week to work on weight training. My work offers a program if an individual’s BMI is over a certain point that they are given $100 a month to use on a gym membership, trainer, or whatever to help them lose weight. I’ve been working out in our clubhouse with 3 of my friends in the ward at 5:00 a.m. and also doing my best to eat right. It hasn’t been easy, but I’m down 50 pounds since my jaw surgery in March. Like I said to Amy when I got Ellie’s hair cut, I hate the diet and exercise is the right answer! Even though I’m getting up so early, I have loved having an association with friends and I feel really good. I should have started this right after Nathan was born and not waiting until last July to get started.

I hope that everyone had a good Thanksgiving and that Christmas will be a happy time for everyone.

I Have Never Doubted..

2009-10-27T14:58:00.000-07:00

Lack of a Creative Post Title for the Dog Visit

2009-10-27T10:55:00.000-07:00

Thank Goodness for Janice

2009-10-26T10:57:00.000-07:00

My little sister Janice was super sweet and dropped everything to come and help me while Nathan was in the hospital. She's a very go-getter kind of person and she helped get my house back in order along with doing some badly needed projects.

Here is what we did:

Finish putting together Nathan's room with the BYU banner, pictures, and a growth chart.

She also helped me redo the bar stools to add a better fabric and a protective cover to them. I loved the way they turned out!

We scrubbed the whole house, got all of the laundry done (the amount of laundry I had to do could have sent anyone into a serious depression), the bathrooms truly scrubbed like they should be, labeled my food storage, and installed a new dishwasher. Yeah, our junky cheap dishwasher quit working a couple of months ago and so Janice took me to get a new one and Tammy's sweet husband Ben installed it for us. Its amazing what a working dishwasher can do to help keep a kitchen clean.

I have the best little sister in the world. Thanks Janice for all of your help!

A Trip to FYZ (Forever Young Zone)

2009-10-26T10:54:00.000-07:00

One of the best parts of Primary's is the Forever Young Zone. On Wednesday, Janice & I took Nathan for a little trip in a wagon over there to play. He loved the Thomas the Train and also loved just riding around in the wagon. When Nathan first got up to walk he looked as if he had never taken a step before. Shaky as he was he got right back up and tried again. That is very symoblic of Nathan's attitude/approach to life thus far. I realize he doesn't know life any differently, but I could never have endured what this little guy has had to suffer through.

Nathan's Coping Mechanism in the PICU

2009-10-26T10:50:00.000-07:00

If I had to sit in my bed all day long being poked and prodded, I'd try to find something that I liked to pass the time too. Thankfully I'm past my thumb sucking stage, but from this picture I'm guessing that Nathan will keep this up until at least 4th grade. These pictures were taken the day after his surgery last week. He's such a cutie!

If you look closely you'll see that Nathan had his IV in his right thumb. The IV went bad later that evening and they had to stick it in his left thumb instead. It was hard to see him screaming for an hour signing "ALL DONE" frantically with his free left hand. He was pretty upset that they took his favorite thumb to suck on too!

We're Home!

2009-10-23T06:27:00.001-07:00

What a crazy couple of days in the hospital! Nathan has done really well this time, and the best part is that the doctor DID NOT have to redo his nissen! He told me that this has happened only a couple of times (2) in the past 5 years with patients like Nathan and that he has had do a couple of hundred of them.

Anyway, Nathan is home and doing well. We got home yesterday afternoon and as soon as Ellie got home from preschool, Nathan was SO EXCITED to see her. He was happy to see Dad, but Ellie is the main focus in his little world. He kissed her several times and giggled as he tried to chase her. I don't know if we'll have more children or not, but there is a pretty special bond between Ellie & Nathan. Nathan just adores his sister.

As far as the echo went, it did get done and the results were read to me yesterday. Nathan's heart has gotten a little bit bigger than last time in the right ventricle, the pulmonary valve is pretty leaky, and now his tricuspid valve is also leaking. The tricsupid valve is likely leaking with the change in pressures from the right ventricle. The tricupsid valve issue is not an original defect in his heart and has been added to the Tetralogy of Fallot issue. The echo report stated that Nathan has severe pulmonary insufficiency.

Cardiology said that I have to remember that Nathan's heart is "fixed" to the extend that they are able. This does not mean that problems don't exist anymore. Its just going to be a life long issue that is not going to magically go away (as much as I would like to). Still, its hard to read those words: SEVERE PULMONARY INSUFFICIENCY.

I need to make a call to the sleep doctor's department (Dr. Daftery) to see if there is anything in addition to the oxygen that should be done for Nathan. I'm a little nervous to make the call because the doctor's always seem to find just ONE MORE THING.

We appreciate the thoughts and prayers for Nathan this week. This has been one of his best surgeries to recover from. In the next day or two I'll have to download the pictures showing Nathan's coping mechanisms in the PICU and the cute puppy that came to visit him again the in the hospital.

Wouldn't An Uneventful Surgery Have Been Nice?

2009-10-19T13:26:00.000-07:00

Kath & I decided to go get some lunch at the University Cafeteria instead of the good ol' Rainbow Cafe. While we were gone, I got a call from the cardiology receptionist saying that they hadn't received the orders for Nathan's echo and so they wouldn't be doing it today.

WHAT THE !*%@#$

Kath & I ditched our lunches and raced back to Primary's to go talk to the right department. I called the ENT first whose nurse said it was the sleep doctor who was supposed to send the order. I went to them and then they said they couldn't find that he ever needed one. I told them our plight and that Nathan was almost done in the OR. They called the charge nurse for the hospital and she then went with me to talk to the underpaid and under appreciated receptionist in cardiology. The receptionist was very MATTER OF FACT. That's when the charge nurse went and paged Dr. Park in the ER. Dr. Park came right down to talk to the nurse and gave the verbal go ahead for Nathan's echo.

The sleep doctor's department said it was cardiology's fault, ENT's nurse said it was the sleep doc's fault. Dr. Downey's office set up the echo, but said it was the ENT's job to send the echo order.

Do you see a pattern of pointing fingers and not taking responsibility?

I can't believe that someone in the chain dropped the ball and that Nathan almost got a separate trip to the OR just for a sedated echo. Everyone at Primary's works as a team, but no one wants to fill out the right paperwork. Good grief.

And the thing that made me the most upset? While I was downstairs chasing down the right people to get the echo done, Dr. Downey came searching for me in the surgical waiting area and I wasn't there. The receptionist assured me that Dr. Downey would come and look for me, but I want to know what happened now instead of in 3-4 hours when the doctor is done with a different surgery.

I have never been so infuriated at this hospital in the last 21 months as I have been today.

Pre Op 10/19/2009

2009-10-19T09:34:00.000-07:00

This morning Nathan went in for his hernia repair and to have his nissen redone. He's always such a happy baby when he goes in for surgery which I've decided makes it almost harder to hand him over. A dose of versed in the nose made him extremely happy go lucky and loopy. He only cried a little when he was handed over to the anesthesiologist. I was VERY impressed with the anesthesiologist who took time to go over Nathan's very lengthy history and to tell me her plan of helping Nathan get the breathing tube out easier. Nathan's sleep study was rushed for this surgery and the results showed that Nathan's severe obstructive sleep apnea was worse than at this time last year. That was very disturbing to Jake and I, especially as the ENT and sleep doctor were concerned that Nathan may have possibly developed pulmonary hypertension. After a lot of phone calls on Friday, it was decided that while Nathan was already in surgery a sedated echo would be performed to check on his heart. One thing that I appreciate about Nathan's doctors at Primary's is that they are open about speaking with us (Dr. Park called my cell phone twice last week to speak with me concerning Nathan's apnea instead of Nathan going in for the doctor visit) and that they work well with each other in determining what is best for Nathan. It is a team approach and no one does anything to Nathan without consulting cardiology and the ENT. Did I mention that I Dr. Park is my favorite doctor of Nathan's?

Since Jake had very little sick leave after his tumor surgery, Kathleen, Jake's older sister, took time off to come and sit with me in the waiting area. She's such a great sister in law and Nathan loves her. Every child needs an Aunt Kath.

I'll post more as the surgery progresses. Nathan is an extremely hard poke and even though he went into surgery at 9:45 a.m., the surgery didn't start until 10:40 a.m. I'm glad that they wait to put the IV in after he's asleep! Poor little guy!

Out with the old, in with the new

2009-10-19T09:32:00.000-07:00

He's going to be a heart breaker some day; scars and all. What else can a very biased mother say?

Mischief in the making

2009-10-19T09:28:00.000-07:00

I shouldn't have given Elisabeth the middle name of Louise. Mischief or even Messy would have had more application to her personality. Don't get me wrong. I love her dearly, but sometimes she tries Jake and my patience to the core. Yesterday was one of those days.

I came home with the kids yesterday afternoon after spending the morning at Primary's to get Nathan's necessary lab work done. I was tired and so I put Nathan in his crib to eat and have a nap (a few plush benefits to a G-tube) and then I went downstairs to sit and rest on the couch. Nathan was quiet and I thought Elisabeth was working on a coloring project or playing Barbies. I think it was only about a half an hour before I went to check on the kids. Ellie was laughing hysterically and Nathan was screeching at his sister. I walked in and Nathan's hair was covered with Aquaphor and baby lotion. Ellie was no where to be found. She had ran and hid in the bathroom closet. She knew she was in trouble. She had covered herself from head to toe with baby powder. The bathroom was COVERED in baby powder too. I don't get why she feels the need to do this kind of stuff. Ugh.

I put both kids in the bath and had to use adult clarifying shampoo to get it out. I bought a bottle of the salon strength kind last year after Ellie aquaphored herself. Are you noticing a trend?

Nathan wasn't terribly happy about what his sister had done and Ellie got to spend 45 minutes on her bed thinking about what she had done. It would have been longer if I hadn't needed to go to choir and conduct.

If she's pulling these kind of stunts at 4, what is she going to do at 16? The thought makes me shutter.

Ellinger Halloween Party 2009

2009-10-19T09:18:00.000-07:00

We had the Ellinger Family Halloween party on the 17th and had such a great time! The costumes were awesome (leave it to Dan & Calli to come up with such fun costumes year after year!), and the kids loved the different activities. The kids decorated some Halloween masks, had a cake walk that Nathan won, and played Bingo. The adults had a competition of trying to eat the donuts off the string the fastest. I won with Kath coming in a VERY CLOSE second. We look forward to this party every year.

Grandma also took a "teaching moment" and talked with the kids about washing their hands. Now I have an OCD child who thinks that she has to wash her hands every couple of minutes. Poor Mallory was afraid of the germs after Grandma told her that children were dying from the H1N1 flu for not washing their hands! There are certainly worse things that a child could be OCD over than washing hands:).

Elisabeth and Libby both dressed as Snow White, Nathan as Nemo, Mallory as Cinderella, Keaton was Luke Skywalker, Kierra as Princess Leah, and Kylan as Yoda. Nathan didn't like the head of his costume, but he was VERY PROUD of being Nemo!

A Quick Little Update

2009-10-15T06:51:00.000-07:00

On Tuesday I took Nathan to see Dr. Downey, a surgeon in the General Pediatric Surgery Department, to have another look at his paresphogeal hernia. The doctor talked with me about Nathan's symptoms and about what my thoughts were on having this operation done. We sat down together and reviewed the upper GI test on the computer. Dr. Downey thought very carefully about it for a couple of minutes, found the upper GI down in January last year, and then said, "I don't like it, but this has got to be fixed. The hernia is much to large and the opening is too tight." A complication of this surgery is that he has to have his nissen redone because that is where the hernia is. I was sick about this because the nissen was one of Nathan's harder surgeries for him. I trust Dr. Downey though. When I had talked to Nathan's pediatrician who had done his residency at Primary's, he commented that Dr. Downey was one of the most conservative surgeons at Primary's and that he would tell me what would need to be done with Nathan's hernia and I should trust him. Both Jake and I really like Dr. Downey and his team of nurses, but this is going to be Nathan's 17th surgery and he'll be a couple of days shy of 21 months when he has this done.

Due to the doctor's schedule, Nathan is going to be having surgery again on Monday. After this last "incident" in the hospital Nathan will again get to spend some quality time in the intensive care unit. Knock on wood, but for being a heart baby, that seems to be the least of Nathan's problems. The surgery will be done laproscopically, but because of old scar tissue from both his heart surgery and nissen/g-tube surgery its going to be harder to recover from than last time.

Monday, the 19th, is the "Big Day" so to speak. It will be just 3 weeks shy of Jake having his bone tumor removed from his femur. The tumor was benign, but he is still on crutches and had his 27 staples removed from his leg last Tuesday. I'll be caring for two invalids which is why I am grateful that Janice is being extremely sweet and coming from Nashville to help me for a couple of days next week. I couldn't have been given a better little sister!

I hope that this will be Nathan's last surgery for a while and that life can resume to being somewhat normal, whatever that may be.

Oktoberfest 2009

2009-09-27T13:05:00.000-07:00

"Roll out the barrel, we'll have a barrel of fun!" (Beer Barrel Polka)

As is a tradition that my mom and Brian started, we went to the Oktoberfest at Snowbird last weekend. Jake and I both LOVE the food, dancing, alpine slide, tram, German bands... what is there not to love about the Oktoberfest. We had such a good time and Ellie loved it! Especially the dancing, alpine slide, and the face painting. Doesn't she look great by the way? It is so beautiful up at Snowbird in September too. We couldn't have asked for nicer weather or for better kids.

They were pretty tired by the end of the afternoon but were troopers to go to the BYU game with us. Now, that wasn't quite as fun to watch your favorite team get slaughtered...

Its Already Started...

2009-09-26T12:55:00.000-07:00

The following day after the Heart Walk, Nathan and Ellie both came down with a good cold and runny noses. By Monday Ellie was still the same, but Nathan really began to have a hard time breathing. He was coughing all night long and by Monday evening he was having a hard time catching his breath period. Jake took him to the Spanish Fork clinic where they took pictures of Nathan's lungs and determined he had croup. Fabulous. Jake came home with a new additional to our home health care stash; our friend The Nebulizer. The first night it frigtened Nathan so bad we had to hold his arms and legs down while the other gave him the treatment. That 15 minutes seemed like an eternity. By Wednesday Nathan was a champ at his breathing treatments. If it started to slide down his face he would push it up just like his glasses. I hope that Nathan won't have any lasting memories of this part of his life.

Did I mention its going to be a LONG WINTER?

Walk for Healing Hearts

2009-09-25T12:39:00.000-07:00

On Saturday, September 12th, we attended the Intermountain Healing Hearts walk. This was the second year for the walk and is intended to raise money for the support group to families like us who have a child or family member affected by a congenital heart defect. I've said it over and over again on this blog, but I feel really grateful to be a part of this group. There is something about sharing such a difficult experience with people like you who understand the emotions of extreme sorrow, hope, and rejoicing. We've made life long friends and its really helped Jake and I to appreciate what we've got.

We're so glad that Kathleen, Kristin, Libby, Mallory, Mom, Dad, and Stephen were able to attend with us to support Nathan. I cannot believe how far Nathan has come since his birth. We've had many ups and downs in the last year and its been nice to have such a good family support system. From my understanding, I think it will be held again next year during the second weekend of September. We can't wait!

First Day of Preschool

2009-09-24T12:06:00.000-07:00

I can't believe that Ellie started preschool this year. Last year we intentionally kept her out of school because we were concerned about the germs that she would bring home to Nathan. We used preschool as a way to encourage her to not have anymore accidents and so far it has worked. She loves being able to go to school with her friend, Heidi, in our ward. We are carpooling with Heidi's mom and so Jake and I are responsible to take them to school 1 day a week. Ellie is attending the Raspberry Sawhorse Preschool in Mapleton with Ms. Jackie as her teacher.

I am very impressed with how the preschool is run and about what it being taught. Ellie came home and told us the other day that she was learning to share in preschool. She said, "I'm so good at it!" When Jake questioned her about sharing at home she responded, "Well, I don't know Dad. That seems a little too hard to share at home and at school!" What a little stinker!

All of that aside, she is having a good time and I can't believe that in a year she'll be going to school with Jake.

Dr. Park

2009-09-23T12:17:00.000-07:00

(Isn't it cute that Nathan is signing "All Done" in the picture!) I love baby signing time!

Dr. Park is by far one of my very favorite doctors of Nathan's. I remember vividly the day after Nathan was born how I had gotten a call from Dr. Park saying that Nathan was struggling significantly to breath and it was due to his severely recessed jaw. He didn't mention to me that Nathan had a code blue call for him in the NICU at Primary's that day(nor did Jake bother to tell me till 2 weeks later!). He was very kind yet concerned that as his mother I had to make the decision whether to operate or not. I was so frightened having to make a decision for a baby I'd only held for 2 minutes on the day of his birth before they had transferred him to the NICU at Utah Valley Regional. In the middle of the night he was determined to be sick enough to warrant having the LIFE FLIGHT team transfer him to Primary's. I'd never seen this doctor's face or had a conversation like this before, but the distinct impression I had was to tell him yes, I would consent to him performing surgery in the morning on Nathan.

He did a fabulous job on him then. He's worked very closely with us to take care of Nathan's severe obstruction sleep apnea. Though I didn't choose him to repair Nathan's cleft, he didn't treat us differently because of it. He's always told us like it is and said what he would do if it were his child. When Nathan had his tonsilectomy, he told us that a small percentage of children don't tolerate the surgery well and what could possibly happen. He even had the forethought to say that he felt Nathan should be sent to the PICU just to be watched.

Nathan's tonsillectomy and appendectomy didn't go as planned. He was in that less than 1% of children group who don't tolerate that surgery. Yet, he always made sure we knew what was going on. We felt we were an equal team member with him in our son's care. Not a lot of doctors treat you that way.

At Nathan's 4 week check up he was a totally different little boy. Dr. Park walked in the room and without saying hi said, "I think you and your husband are the only parents that I've met that didn't flip out when your son had a code blue called on him." I smiled and replied that it certainly wasn't the first time and I'm sure its not going to be the last.

Dr. Park is such a sweet man with a good heart. He is an EXCELLENT children's doctor. We were very fortunate that he was on call when Nathan was transferred to Primary's. He has made a huge difference to Nathan.

Elisabeth's First Swimming Lessons

2009-09-23T11:52:00.000-07:00

This summer Elisabeth took her first swimming lessons at the Spanish Fork pool with Kayden. She absolutely loved it! She is a little fish in the making and was very proud of her certificate of completion. Even as I write this, its still hanging on our fridge 2 months after the fact and she shows it off every chance that she gets. She knows that she had to work hard to earn it and it was good to recognize her little accomplishment.

She can hardly wait for next summer!

56 Pushups and 150 Sit Ups

2009-09-09T07:00:00.000-07:00

Can really make a person TIRED!

(But I couldn't do that 8 weeks ago!)

"Operation" Ellinger

2009-08-28T15:22:00.000-07:00

I'm suddenly feeling like our life is a never ending game of operation (you know - the milton bradley game where you try to get the parts off the board without the game buzzing at you?) With Nathan it was always just ONE MORE operation. Now, we think that's finally true. So recap for my family for the last 3 years:

2006 - Mom has serious internal bleeding and admitted to UVRMC. Ends up spending 3 solid months in the hospital.

2007 - Mom has biopsy of strange lump in her thigh. 3 months later the doctors realize what the lump is. Mom passed away of calciphilaxis in June. Jake and I spent the last year of mom's life caring for her at the hospital and at home. We became home health care nurses, wound nurses, took her to dozens of doctor appointments etc. It was a break in period for what was to come.

2008 - Nathan born. From January 2008 - June 2009 Nathan endures 16 operations.

March 2009 - I have jaw surgery and spend 8 weeks "sipping cider through a straw".

August 2009 - Jake has been having pain in his right groin area for quite some time but decides its really starting to bother him. He goes to a pediatrist who says there is something wrong with his hip and refers him to an orthopedist. That doctor orders an x-ray. The diagnosis?

Jake has a bone tumor aproximately 2-3 inches below the right socket of the hip that adjoins to the femur. Its about five inches wide and 3 1/2 inches long. Roughly the size of a baseball. Its probably benign, but they can't be for sure about it. One thing that is for sure is that it HAS TO COME OUT. Jake is seeing a tumor specialist in Salt Lake in a week and a half.

Poor Ellie. I told her last night that Dad's body is sick and he will have to go to the hospital to have an operation. Her reply was (in a VERY CONCERNED TONE,"Does this mean that Dad won't be able to eat either?" All she has seen with operations is that Grandma Ellinger wouldn't eat for a long time, that Nathan doesn't eat orally, and that when I had my jaw surgery I didn't eat for a long time. She's a smart little kid to put that all together.

Please pray for Jake. I think he's deservedly a little more freaked out todey than he was yesterday when he found out. But he's a guy and won't let it out too much that he's nervous about this.

IHH Heart Walk

2009-08-19T15:20:00.000-07:00

Its that time again! Intermountain Healing Hearts is holding their annual heart walk on September 12th. The donations for this go towards helping provide care packages to families and to help support a summer camp for heart families to attend. This group means the world to us!

Last year it was great to see Kristen, Shawn, Libby, Mallory, Kathleen, and Dad attend the walk with us. This year we are aiming for a better turnout! Mom, Dan & Calli, etc. this is your invite! I'm hoping that I can get Brandon, Jessica and Stephen (my nephews and niece attending BYU) to come too!

And maybe, just maybe, Nathan will be walking a little bit just in time for the heart walk. I guess what I'm trying to say is that not only do I view this as a great opportunity to do something enjoyable and to help other's out, but its in a small way a celebration of Nathan's accomplishments in the last year. That little guy is a fighter. 16 surgeries in 18 months. And its not just him, its so many other children and adults (like Kristin)just like him! Please come and join us for this event!

Notice the New Ticker -

2009-08-12T08:05:00.000-07:00

No, I'm not pregnant and don't plan on becoming that way any time soon! However, after 3 YEARS of braces as an ADULT, I'm finally getting them off!!!

September 3, 2009 is the BIG DAY!

I deserve a little love here because it wasn't just wearing braces for three years, I now have 14 pins and 4 metal plates in my face that I will keep with me until I die. That doesn't count the permanent retainers that I'm asking to be placed so that after all of this misery and embarrassment as an adult that my teeth will be just as I need them to be.

22 more days till I can say, "BEEN THERE, DONE THAT!"

The Littlest Heroes Project

2009-08-05T08:20:00.000-07:00

Thanks to Nevaeh's Mom, we found out about the Littlest Heroes Project. I can't figure out how to get this to link properly, but this is where you go to find out about them: http://www.littlestheroesproject.org/

Basically they connect a photographer to a child who has a serious life long illness and Nathan's birth defects qualify him for this. We submitted an application for Nathan and were accepted! They matched us to Sara Boulter (www.saraboulterphotography.com) and she took pictures of not only Nathan, but of both kids and a good family photo of us. I am so excited to have these pictures since we haven't had a family picture since Elisabeth was a baby! The best part is that we didn't have to pay for these BEAUTIFUL pictures as this is not something that we would normally be able to afford.

What an AMAZING foundation and such a kind talented photographer!

Bear Lake 2009

2009-08-03T07:34:00.000-07:00

This weekend we went with Ben and Tammy, our good friends, to Bear Lake. We split the cost of renting a condo and played on the beach all day Saturday. We had such a good time! (I'm not sure how Ben and Tammy tolerated us, but we want to make this a yearly tradition!) Overall, I think the kids did very well playing together. Although we usually do this trip camping style, I'm a big fan of renting a condo now! Next year we're going to reserve it much earlier so that we can get a bigger condo to split (and one that doesn't have a wierd jungle theme going on with it).

The best part? The raspberry shakes! Yum, I can't get enough of those every year.

What I would do again? Not go during Raspberry Days! Ugh!!! It was so crowded this year!

Thanks Ben & Tammy for such a good time!

Besides renting a waverunner for a couple of hours and having fun with it, Jake was just content to sit and read a book for the afternoon and snooze away with Nathan. In this picture his knees and legs are white, but after a couple of hours in the sun without a reapplication of sunscreen, he looked like a lobster!

Kayden LOVED swimming in the water and playing in the dirt. This boy was in 7th heaven up there!

Tammy sat on the sand and played with Carlee for a while. That little girl is such a tomboy! Mud, mud, and mud was all it took for her to be happy the whole day!

Ellie had a great time playing in the mud too although she was just as happy to get in the water and to play. She LOVED having Tammy's kids there to play with.

Ben was the BIGGEST kid of them all. The whole day he sat and dug in the sand with the kids making huge sandcastles and then just a big whole in the ground. The kids loved it though. It was good to have Ben there to keep everyone entertained.

SAND + WATER = EUPHORIA for kids

This is the picture of Ellie with the look that says, "I can't believe you are taking a picture of me when I'd rather be playing!"

These next 2 pictures of Ben speak volumes about him!

Ellie and Chris playing in the water. One of the things I love about Bear Lake is that the kids have room to roam in the water without us feeling like they are going to drown.

Carlee in the ZONE!

Nathan is a rather odd child sometimes which in some ways make him such an easy baby. He REFUSED to let us put him on the sand to sit and play. This boy has serious texture issues. He happily sat in the stoller ALL DAY without whining or crying. He loved watching the other kids and taking a long nap on the beach. What a silly child!

Carlee making a sand castle. Did I mention how much that girl loves the dirt?

Daddy Daughter Dance

2009-07-30T06:51:00.001-07:00

Since I didn't have a camera with batteries that would function properly, I had to swipe these off of Calli's blog! (Thanks Calli for putting them up!)

My mother in law has ambition. She decided for our family reunion this year that she wanted to hold a Daddy-Daughter Dance and that she would sew each one of her five granddaughters a play dress and a princess dress. The dresses turned out perfect! Before the dance she had the little girls go to the MATC college (where Nicole, our babysitter, goes to school) to get their hair done, a little bit of makeup put on, and to have their finger nails painted. The little girls ATE IT UP! It was so fun watching them get ready and to feel so grown up.

My mother in law didn't stop there though. Before the dance we met at her house and had a lesson on modesty. My cute little nephew, Keaton, made us all die of laughter. You have to keep in mind that he is 5 1/2 years old. This is Calli's (his mother's) account of what happened:

Grandma wanted to teach her grandchildren about
modesty. She had the children tell her what dresses
were and weren't modest. Grandma then asked, "What
if you can see her belly button?" Keaton replied, "Well
then you could see all the way down to her ninnies!"
Everyone about fell off their chairs laughing, guess I
should have just told him what the real name for them was!

You know something though? Each of of those children older than 2 understood what Grandma was telling them and several times Elisabeth has pointed out to me people in magazines or even at the grocery store who aren't modest. She has also been a little more careful about wearing shirts under dresses and other outfits that aren't quite as modest as they should be. I think its a lesson that will stick with her.

The dance was wonderful! We waltzed, did the tango, the Bunny-hop, swing, you name it! It was just fun to get up and move with the family where no one cares what you did. My mother is law also had each of the dads get up with their children individually and tell everyone why that child was special to the family. Ellie ate it up that her daddy had good things to say about her. A couple of weeks later Ellie said to Jake, "Next year at our dance, you should tell everyone that I'm a good swimmer and that I can be helpful sometimes too!" Ah kids!

We all had a good time! (Although now that Grandma has done so much sewing for the girls, Ellie wants Grandma to make MORE dresses for her!) I married in to a great family!

What Its Like For a Sibling of a Chronically ill Child...

2009-07-29T07:44:00.000-07:00

It’s not that we have fallen off the face of the planet, but life has been fun and BUSY. I was cleaning out my purse this morning and I found this letter that Elisabeth (dictated to Grandma) had given me to give to Nathan when he was in the Intensive Care Unit at Primary’s. It was so sweet I had to put it here.

Dear Nathan,

I LOVE YOU. I want to tell you that I really miss you. I really love you and miss playing with you. Cassi misses you too. Sally really loves you forever. Mickey Mouse really loves and misses you forever. Raggedy Ann and Cinderella really miss you too. I really love you and miss you.

I want you to know that I have a light blue, white and dark blue new dress that has shiny lines in it that Nicole bought me yesterday. I want you to get better so that you can see my new dress.

I slept over at Grandma and Grandpa’s house and I really love you forever. I really really miss you. And I really miss you because I really love you. I miss you when you make a mess with my Barbies and Polly Pockets. I miss watching you crawl and me catching up with you and being in front. I love you Nathan.

Grandma cries when she thinks about you and she is sad that you are so sick. She wants to be there with you and sing songs to you. And Grandpa wants to be there with you too. All my friends really love you.

I wanted to come and see you in the hospital but mommy said that you are too sick and I can’t come but I wanted you to know that I wanted to be with you. All of my friends want to be with you too because they miss you.

I hope you enjoyed the hugs and kisses that I sent to you last night. Nathan do you want to be with me because I miss you and want to be with you. I have to end now.

Love,

Elisabeth

Ellie was a month shy of being 3 when Nathan was born. Even though she's four and a half now, I think that she is frightened every time we go up to Primary's with Nathan even if it is just for a check up. She really loves her little brother and just wants him to be home and to have a normal life. I don't think that families were put together in randomness and chaos. I firmly believe that Nathan and Ellie were meant to grow up together. She is his little protector.

I have to recommend a book that child life gave us at Primary's for Ellie. Its called, "Hi, My Name is Jack". Its one of Ellie's favorites and talks about feelings of the siblings and how its ok to feel sad, angry or scared. It also teaches the kids that they should talk to someone about their feelings. This letter was a good little exercise for Ellie with Grandma because she got to tell Nathan how she felt.

Anyway, I thought it was sweet and something that I want to remember later in life.

What We Have Been Up To

2009-07-09T13:27:00.000-07:00

What a crazy 2 weeks! It began as so much fun and then went down hill from there. On June 26th we took Kathleen and Mom with us to the Mormon Miracle Pageant in Manti. It was awesome for Ellie to see the characters in their clothing before the performance and then to have her see the stories of the Book of Mormon come to life. We had rented the upstairs of the home of the owner of the Manti Inn and so we had to walk a block from the temple to where we were sleeping after the performance was over. I would tell EVERYONE to do this! It made the pageant so much more enjoyable! Plus it was nice to be able to brain wash Ellie into telling her that she needed to have her "prince" take her to the Manti Temple to get married. (Its been 7 years since Jake and I were married there and every time I see that temple the rush of the feelings of that day still get to me).

Monday, June 29th, came and with it the start of a scary week. Nathan was scheduled to have his tonsils taken out and his adenoids shaven. What would seem like a relatively simple operation for any normal child would turn into major drama for mine! Nathan had a late surgery and didn't get into the operating room until almost 6:00 p.m. He needed this done because he's been having major problems breathing and so it was the hope of the doctors that this would help Nathan out! The operation itself went fine, but Nathan's little body had a hard time dealing with it. His body didn't know what to do with the extra fluid and it went to his lungs. Because of Nathan's past medical history every operation sends him to the PICU just to be "watched". Its a good thing because 20 minutes after the conclusion of the operation, Nathan's little body stopped breathing and his heart rate dropped into the 20's and 30's on the monitor. He was immediately intubed and left with the ventilator do breathe for him. He spent all of Tuesday letting the machine breathe for him and then the doctors decided to try and take him off the vent Wednesday evening. Nathan had to go back to the operating room to be extubed just in case. He was kept in the PICU until late Thursday afternoon just so the doctors could make sure that Nathan was stable enough to move. We wanted home so badly that Jake and I asked to take Nathan home on Friday morning. I think they did this because Jake and I know how to care for this child just as well as the nurses on the surgical unit.

What a crazy week! Nathan sure likes to keep us on our toes!

The Head Doctor of the PICU put this sign on Nathan's bed because they had such a hard time re intubating him. I even was given a stern lecture for lifting Nathan's little body back to center of the bed when he has slumped over. I was a little upset because this child has been intubated so many times in his life after surgery and they were treating me as if I were a young dumb teenager who had no clue what was going on.

Due to Nathan's heart condition the doctors couldn't keep Nathan quite as sedated as they would have liked. Nathan has such a temper that every time he woke up he tried to pull the breating tube out. If you look on his wrists you'll see that they had to tie both arms down to the bed.

This surgery plus the past 2 cleft surgeries since March have taken a toll on his little body. He is now down to 16 pounds, 7 oz. He is on oxygen all the time for a while to help his body heal by not working quite so hard. What a little trooper!

Let Me Run in the Sun ...

2009-06-24T19:17:00.000-07:00

and remember the days of childhood forever.

My New Goal/ Any know of a good cellist?

2009-06-01T14:14:00.000-07:00

I'm going to learn this song on the piano. I've always liked both songs and I think its a great combination! When the sheet music comes out I'm going to find myself a good celloist and play it.

Side note: When Jake and I went to the concert for another heart family on April 6th, we saw the celloist play in person. It was absolutely amazing and I want to get tickets on September 6th to see him and Jon Schmidt play again in concert!

The REAL Measure of a Person

2009-05-29T13:56:00.000-07:00

Every so often you hear of a person who has overcome tremendous odds in order to succeed. The journey was long and at times very lonely, and yet with the goal in sight they persevered forward. My niece, Erin, is one them.

Erin was born to an unwed teenage mother. She was loved dearly by her maternal grandmother and adopted Grandma "Net". Through a series of choices made by her mother she ended up with 3 others siblings and mother who dealt with 2 difficult marriages. Her mother succumb to drugs, depression and isolation forcing everyone out of her life. Erin's stepfather moved from job to job due to drug addictions. The addictions of her parents led them to become in trouble with the law due to theft, fraud, concealed weapons violations, and heavier drug charges. Erin as a young child became the mother to her brothers and sister. She cooked the meals, helped try to clean the home, sent her siblings to school and did her best to make sure that she was in school. She carried a heavy, silent burden and seldom talked about her family whenever she was even allowed to come to family functions.

I'm ashamed to say that my family knew what was going on but due to the way my sister had treated everyone, no one wanted to step in and help. I think each one of us will have to answer for that someday.

Things came to a sudden turning point 2 years ago this month. My mother was dying and in a hospital in Salt Lake City. My life was busy; I was working full time and trying to care for a terminally ill parent. Jake was trying desperately to complete his last class to graduate with his bachelor's degree and between the two of us, we were doing our best as young parents to care for our 2 year old daughter. I had just found out I was pregnant and with that came the mixed emotions of knowing I was going to loose my mother and would be having a child that she would never know.

A couple of weeks before Mom passed away I received a phone call from the police at work saying that my sister and her husband had both been arrested and that I needed to go quickly and pick up their kids. I went to find 4 frightened children sitting in the living room with the police as their parents were handcuffed and shackled on the couch. I quickly grabbed some clothes for the kids and took them to my house. I had just became a "parent" to 4 kids who had needs bigger than I knew how to deal with. I was not mature enough to care for those kids.

It was with a heavy heart that Jake and I made the decision to place the kids in foster care. It was really the best choice for everyone, but the looks on the kids faces as I left them were indescribable. Erin, especially, had a hard time dealing with everything that had just happened to her family. She had tried so hard to keep them together and yet nothing was ever going to be the same.

For a long time I used to blame myself for Nathan's health problems. Was in my fault? Did I eat something wrong? Was it because I was caring for my mother who had a deadly strain of bacteria? No, it was the Lord's plan. I have had no regrets since Nathan was born that we placed those children in foster care. We couldn't have cared for them in the way they needed and Nathan at the same time. They were placed with the best foster parents, Doug & Jane and another mother, Carolyn. What a tremendous impact these adults have had on these children. They have been loved and well cared for. The foster care system truly worked for these children.

Jake and I have kept in contact with Erin and have seen the kids several times in the last two years. Erin's parents have been in and out of jail several times. Even on graduation day, Erin's mother was currently serving more time in jail.

Erin graduated with honors from high school yesterday afternoon. She has learned to love our Heavenly Father and lean on Him for guidance. She is slowly learning that she has worth as a young woman and that if she works hard she can achieve her goals. Graduating from high school is just the first in many great achievements that she is going to make. Statistically Erin should have followed in her mother's choices and been involved in drugs or becoming a young teenage mother. She set her mind on a goal and even though she struggled emotionally these last 2 years she made it! Erin has been accepted to Brigham Young University and will be attending college there.

Jake & I are extremely proud of Erin. What a privelege it is to be her aunt and uncle.

A BIG Hurrah!

2009-05-20T08:48:00.000-07:00

Yesterday I took Nathan to see Dr. Siddiqi who performed Nathan's 5 (yes 5!) cleft surgeries. Nathan's mouth is healing very nicely from his final repair and we will need to follow up with Dr. Siddiqi only once this fall in the craniofacial clinic and then on a YEARLY basis after that to watch for Nathan's speech development. That's 3 doctors in the last month and a half that have said see you in a year! I can't even tell you what that means to me for taking off of work and that it shows Nathan is making huge progress!

Now we're just waiting patiently for Nathan's next surgery in June...

How Do You Sleep Like That?

2009-05-18T07:00:00.000-07:00

SERIOUSLY?

That's Ellie's method of going to bed. Notice Sally the blue dog and Cassi her doll with her. Those two accompany her to bed every night. So why did we buy her a bed when a $20.00 bean bag is her choice of places to crash?

Bionic Boy

2009-05-17T07:24:00.000-07:00

...at least that's what he should be called because he's running out of body parts to operate on!

Once again on June 29th, Nathan's going to be back in the PICU at Primary Children's looking like this:

(small side note here: that blue thread coming out his mouth was sewn in through his tongue to hold it down and not block Nathan's airway while he mouth was so swollen on the inside. It seriously creeped me out to know that the doctor had stuck a needle through Nathan's tongue.)

Only this time it won't be on his cleft, he will be having his tonsils out, having his adenoids shaved down somewhat, and then a camera stuck down through his cranial openings to have a good look at why Nathan still is having serious airway obstruction. Jake and I have opted to go this route first. If this doesn't work, Nathan may need his tongue advanced in his mouth.

*Patsy, I know we originally told you it was going to be July 14th. However, I got home and realized that our insurance plan year starts over again on July 1st. Since we already maxed out our insurance this year, we won't have to pay for that operation. We'd pay out the nose for it first thing in July. The doctor's office told us that was the earliest time to do it since it will only be 7 weeks out from Nathan having his cleft surgery.

Play is the Universal Language of Childhood

2009-05-16T06:45:00.000-07:00

Yesterday I had to take Nathan up to see Dr. Siddiqi and Dr. Park for a look at his cleft and his airway. Since the appointment was at 9:00 a.m., I told Elisabeth that if she worked hard at completing her chores this week that we would go to the Children's Museum. That was enough motivation for her and her chores have been done all week! What a difference that has made to how our house looks!

Patsy, Jake's Mom, was so good to come with me and the kids. She brought Elisabeth up to Salt Lake so I wouldn't have to take her to the doctor's offices. Its nice having a grandma so close that likes to do fun things with us. Both of the kids adore her!

We had a good time playing in the house, pretending to be fire fighters, making a butterfly sun-catcher, touching a frog, drawing, building towers out of blocks to outlast an earthquake, and just enjoying my kids. Sometimes I think I get so busy taking care of Ellie's & Nathan's physical needs, that I don't help development their emotional needs as well. I really do enjoy just sitting and watching them play.

I decided that since we are up at Primary's at least twice a month still, that I would buy a year pass to the Discovery Gateway. It will be a nice treat to look forward to on the days that we have to go up and sit and wait for doctors. Plus I think that it will be nice for Jake to have something to do with the kids this summer.

15 1/2 Month Stats

2009-05-12T06:58:00.000-07:00

Nathan's nurse came to our house last night to check on him and get a weight, height, and head circumference on him. Here's where's he at:

Weight: 17 lbs. 4 oz. (considering a month ago after having the flu he was down to 16 lbs 4 oz this is great!) However, that puts us way in the outer range of not being anywhere close to a "chart". In fact, the nurse joked that Nathan is in "total outer darkness" territory. That's Nathan though and if I'd been through what he has, I'd be struggling too. We'd like to see him at 18 1/2 pounds by the end of July.

Height: 30 inches (10th percentile)

Head: 46.1 centimeters (25th percentile) His head is the only thing that has grown on a consistent basis since he was born. I'm glad to see that because its also showing normal brain growth.

Nathan's favorites: tubtime (particularly splashing with his sister), being held by mom, dogs (he can't talk but he can mimic a "woof" sound), and following his sister around, and babies.

Nathan's dislikes: being weighed, seeing a doctor, going to a stranger, sitting on grass, or being put in the sandbox. You'd think a little boy would love grass and sand, but hopefully that will come.

You're making progress Nathan!

Slacker Blogger

2009-05-11T13:12:00.001-07:00

Ok, so I haven't been very good at updating since Nathan left the hospital. He was able to come home on Sunday, May 3 after only 2 days in the hospital. That has to be a record for him! I think though that the doctors have a better feeling for Nathan and also that they understand that Jake and I are capable of taking care of him and his equipment at home just as well as the nurses would at the hospital.

While Nathan was able to come home faster, he also has grown very leery of everyone around him except for Mom and Dad. Even then, sometimes Dad isn't good enough. He's been VERY clingy this week. I can't blame him. I think this is an age appropriate thing too as Nathan is old enough developmentally to start to become aware of strangers. Ellie didn't really go through this phase very long, but if I remember right Kristin's girls were that way for about 9 months. Correct me if I'm wrong Kris.

Nathan still isn't walking with his 16 month mark coming up on the 22nd. We were warned by his physical therapist that Nathan will be closer to 18 - 19 months before that happens. He'll walk with a push toy, but doesn't have the balance or stamina to do it on his own yet. He can, however, now crawl down the stairs by himself when he really wants something. He's making progress and even though its little by little, he's still coming along!

I had a nice Mother's Day with Jake giving me a Willow Tree figurine and an outside rocker from Cracker Barrel. I'm excited to use it for watching Ellie ride her bike or scooter in our driveway. The primary children made a card to their mom's where each of the kids were asked how they know that their Moms love them. Ellie responded: "When she plays with me and my brother". I need to remember to sit and enjoy my kids instead of being so busy trying to get everything in life done that I hardly spend one on one time with them. It was a sweet reminder.

Rusty the Furry Therapist

2009-05-02T13:32:00.000-07:00

This is Jake by the way. We are out of the PICU and onto the Children's Surgical Unit. These are the best rooms in the hospital, but I digress. We got down to the floor and we heard a sound that we had never heard in a hospital before, dogs barking. Our new nurse asked us if we would like to meet the new dog. Nathan was really fussy as he doesn't like driving around in his bed, so we thought seeing a dog might cheer him up. Sure enough, we were right. A couple minutes later we met Rusty. Rusty is a golden retriever who is part of Intermountain Therapy Animals. Donna Olsen brought Rusty in and he laid down next to Nathan. At first Nathan was a little unsure about the dog and was still crying, but Donna had Rusty speak. Rusty barked and Nathan got the biggest grin on his face. He would giggle every time that Rusty would speak and he sat and patted Rusty for a good 15 minutes.

We are so grateful to all the nurses and doctors who have helped Nathan along all this time, but it is volunteers like Rusty and Donna who make our visits special. So once again this is a shout out and a thank you to Donna and Rusty for making Nathan's stay a little more comfortable. We also want to thank the volunteers from the Forever Young Zone who find toys for Nathan to play with. They are so good at picking out toys that he loves.

While we hope that Nathan doesn't remember any of this, Steph and I will always remember the special people who helped us and Nathan through these times.

Information on Pulmonary Valve Replacements

2009-05-01T16:16:00.000-07:00

This was posted on: http://www.wsoctv.com/health/19270986/detail.html

This is important to us because we know that Nathan's going to need a new pulmonary valve with his heart defect.

Congenital Heart Disease
Posted: 11:04 am EDT April 24, 2009

Congenital heart disease refers to structural abnormalities of the heart that are present at birth. According to the American Heart Association, every year, about 35,000 babies in the U.S. (about one out of every 1,000) are born with some type of congenital heart defect.

More than 35 different types of defects have been identified. Some defects lead to a hole in the wall of the heart, a malformed or missing chamber or improper positioning of the blood vessels that connect the heart, lungs and body. A heart valve defect may involve a missing or malformed valve, failure of the valve to fully open (valve stenosis, or narrowing) or an inability to close completely, causing blood to leak through (valve insufficiency).

Replacement of the Pulmonary Valve

The pulmonary valve is a one-way valve that controls the flow of deoxygenated blood from the heart to the lungs. A child born with a defective pulmonary valve may not need immediate treatment if the problem is minor. But in serious cases, the defective valve interferes with the ability of the heart to pump blood into the lungs, eventually weakening the heart muscle. In those instances, doctors may recommend a pulmonary valve replacement through open-heart surgery. An incision is made into the chest to access the valve. The diseased valve is removed and replaced with a cadaver or artificial valve conduit (tube with a valve inside) that connects the right ventricle to the pulmonary artery.

While pulmonary valve replacement can greatly improve a patient’s quality of life, the average lifespan of the device is only about ten years. Thus, patients face multiple surgeries to replace the worn valve as they grow older. Thomas Jones, M.D., Pediatric Cardiologist at Seattle Children’s Hospital, says re-operation is technically more challenging because the surgeon has to cut through scar tissue. The surgery is also riskier for the patient, due to an increased risk for bleeding and infection.

Surgeons at select U.S. centers are now testing a new type of replacement pulmonary valve, called the Melody™ Transcatheter Valve. It’s obtained from a valve section of a cow’s jugular vein. Jones says the jugular veins of cows are about the same diameter as the pulmonary artery in humans and have well developed valves.

Instead of making an incision into the chest, the Melody valve is placed nonsurgically, via a catheter. The stent is closed to compress the valve and placed onto the tip of the catheter. An incision is made into the groin and the catheter is fed through a leg vein up to the heart. Once in place, the stent is expanded to open up the Melody valve inside the worn out valve.

Currently, researchers are testing the Melody heart valve in children who have already had valve replacement surgery and need another replacement. Preliminary studies show the valve can be successfully and safely implanted and, at least in the short term, leads to improved heart function. Jones says placement of the valve from inside of the body avoids the pain, recovery and potential complications associated with open-heart surgery. Although the new valve is not expected to last forever, investigators are hopeful it will reduce the total number of surgeries patients will need throughout their lifetimes.

In addition to Seattle Children’s Hospital the Melody Transcatheter Valve is being studied at Children’s Hospital Boston, Morgan Stanley Children’s Hospital of New York-Presbyterian Columbia University Medical Center, Miami Children’s Hospital and Nationwide Children’s Hospital in Columbus, OH.

For information on congenital heart defects:
American Heart Association
Congenital Heart Information Network
March of Dimes
National Heart, Lung and Blood Institute

Try Try Again!!!

2009-05-01T14:59:00.000-07:00

This afternoon we took Nathan back up to Primary Children's Medical Center to have his cleft palate repair, again. He was just so happy this afternoon and had a great time playing with the toys in the surgical prep area. He only screamed when the nurses weighed him and checked his length. Nathan knows now that having those things done is a sign of something bad to come!

Ellie did the sweetest thing before we took Nathan up to the hospital. Grandpa Ellinger and Dad gave Nathan a blessing and before we left, Ellie gave her prized "Sparky" dragon to Nathan to take with him. She loved that toy and so it said a lot that she would let her brother take it with him to make him feel better. As hard of a child as she has been to deal with lately, its moments like this that I'm glad that she's ours. Now if only she hadn't made our food storage area a winter wonderland with the flour...that story is better saved for another post.

We'll update as soon as Nathan is done.

San Francisco

2009-04-28T06:45:00.000-07:00

On Saturday, April 18th, we drove to San Francisco to show my niece, Erin, around. We made the mistake of not finding the best parking spot and ending up walking from Pier 15 to Pier 39 and then on to the Cannery and Ghiradelli Square. Oh we were so tired when we got there! Jake had bought baseball tickets to see the Giants play the Phillies and so we had to hop on a trolley and ride the metro system to get back to the opposite side of town. Nathan sqealed in delight when the trolley started and everyone on the car looked at him. I had several comments of "look how cute that little boy is" and the infamous question: "How can they tell a baby that age needs glasses?". I wish that we would have had 2 or 3 days to spend there, but alas, this is the second time in our marriage we've had to do San Francisco in a day! Remember the first time Kath? The oxygen bar... racing back to get on the ferry on time? Freezing in the morning and then by the evening wishing I hadn't brought a sweater to carry? That was such an awesome day!

We had fun at the baseball game and we all were fried. My nose is still peeling from a week and a half ago! Jake loved taking his son to his first professional baseball game and explaining to Ellie that she is going to be like Kayla and play softball. Jake patiently told Ellie all about the positions and how someday he hoped that Nathan would pitch for the Red Sox (its a long shot but like Ryan Shupe's song says "Dream Big"!).

What an amazing and fun day. We can't wait to take our next family vacation to Seattle in June!

Water Babies

2009-04-23T11:15:00.000-07:00

Nathan and Ellie are both an Aquarius! We bought Nathan his first swimming suit (which drowns him and is size 6-9 months). I love that they make the suits that have a shirt with it too and that this year it is to cool thing to buy. Its great at hiding the g-tube and awesome at keeping the sunburns under control. We bought Ellie a regular swimming suit, but I also bought the cover because she wanted to be like Nathan and I love how modest it is.

On Friday afternoon while Grandma Ellinger was napping, we went back to the hotel to go swimming. Nathan LOVED splashing in the water. He would laugh and laugh every time he hit his hands to the water. Ellie thought it was great to go swimming in the "cold" tub and the hot tub. We need to take both of them swimming at the clubhouse more often!

Visiting Grandma Ellinger On April 17, 2009

2009-04-23T10:40:00.000-07:00

Over Spring Break, Jake and I decided to go and visit Grandma Ellinger in Sacramento. It was a LONG car ride, but I'm grateful for the car dvd player. I'm not sure what Elisabeth sees in the movie "Bolt", but it kept her pretty occupied. We made a ton of potty stops on the way and even Ellie decided she'd rather hold it then have to stop at the side of the road to use the bathroom.

On Friday morning we went to see Grandma. It was so good to see her! She loved looking at the kid's scrapbook pages and hearing all about our adventures with Nathan. She asked lots of questions and was in such a happy mood.

The best part of the morning visit with her was that she was able to hold Nathan. He LOVED sitting on her lap and when he was given his favorite BYU blankie, he held it and fell asleep on Grandma's lap. I think she really enjoyed holding a baby and she was thrilled that Nathan was comfortable with her enough to fall asleep on her. That made our trip! We really wanted Grandma to meet Nathan and he was so sweet that morning with her.

Its easy to tell that Grandma is slowing down and that she isn't able to walk or function for herself. She does have some dementia, but she has a good long term memory. She remembered that we hadn't been there to see her in 3 year. (What can I say, its been a BUSY three years for us!) We spent the last 3 years helping mom when she was sick, going to graduate school, Jake getting his bachelor's degree, dealing with Mom's passing, buying her home, having Nathan... and then spending 15 months of surgeries, hospital stays, numerous doctor appointments... I think she understood but we should have been better.

We spent an hour and a half that morning with her and then went back for dinner that evening. The kids had a harder time in the evening as they were both extremely tired. We took Grandma for a walk around the grounds and then took her back to her room. She asked so many questions about Nathan's health and was truly concerned about him. She laughed at the jokes and loved hearing about the time that Ellie peed on the grass after getting her bike last summer. She truly loved being around and seeing her great grandchildren. We also went back for an hour on Saturday evening and left Elisabeth with Erin at the hotel. Both Jake and I wish that Grandma were closer. It was hard to visit her and have to leave her behind. I'm not even her blood grandchild and I was in tears for having to leave her.

Maybe it was because we watched mom pass away for a year, but it wasn't that weird or hard to be around Grandma. Elisabeth did well around her for the most part too. I'm not sure what our vacations will look like for the summer, but I'd like to go back again for a visit.

Preview of Our Trip to Northern California

2009-04-22T20:53:00.001-07:00

"Mom, Are You Done Taking Pictures YET?"

Nathan's Cardiology Checkup

2009-04-14T06:30:00.000-07:00

I have to say first that I LOVE Dr. Cowley. He seems to be the only doctor that hasn't come up with a list of additional problems for Nathan at every check up we go to!

Nathan's heart is doing wonderful. He does have a very soft murmur, however, Dr. Cowley feels that Nathan could very well make it to be a young teenager before he needs another heart surgery. Wouldn't that be awesome! We don't have to see cardiology for 1 WHOLE YEAR! For other heart moms, you know what a big deal this is. Its a sign of stability and life becoming a little more "normal" (whatever that word really means these days).

I'm sad to think though that due to Dr. Hawkin's illness (which we have been asked to give Dr. Hawkins privacy and time to deal with before blogging to the whole world about it), he won't be around at that time when Nathan needs another heart surgery. Dr. Cowley said that we were very fortunate to have him work on Nathan because of his skill. Dr. Cowley believes that it was Dr. Hawkin's magic who has helped make it possible for Nathan's heart to be doing so well despite his other "issues" we are dealing with.

Way to go Nathan!

We Have A New Date

2009-03-30T14:32:00.000-07:00

For Nathan's cleft surgery...

May 1st

This had better be the last cleft palate surgery ever for this child. (I'm sure the insurance companies are thinking that too!)

An Explanation For Yesterday

2009-03-28T06:58:00.000-07:00

So the reason that Dr. Siddiqi didn't perform the surgery was because Nathan has a prosthesis in his mouth that is held in by 2 pins that go first through the device and then up into the tissues in his mouth. There is no way that the doctor could tell that there were any problems with the tissue until he actually took out the prosthesis, which can only be done under anesthesia because they have to use a drill to unscrew them out of the mouth. When Dr. Siddiqi took out the prosthesis, he noted that the pins had substantially irritated the skin surrounding the site and so he felt that if he tried to repair the cleft yesterday that the irritated skin when pulled and sewn together would begin to tear since it had not had an opportunity to heal properly. I will have to call his office on Monday to reschedule the procedure. We have to wait at least 3-4 weeks before we can try this again. Its wierd looking inside Nathan's mouth to see the open cleft again (we haven't seen it since July of last year).

When Nathan woke up from the anesthesia yesterday he was mad! Mad is an understatement of the year. We spent almost 2 hours in the PACU (the first place you are taken after an operation) because he kept desating into the 60's. He was intubated for the surgery (which he hates) and was given enough "happy juice" for a 3-4 hour surgery. When he finally calmed down a little we were taken to the Post Operation waiting area. Poor little guy just wanted to sleep but he hates it when he has to have oxygen so he kept figiting with it. The nurse told us that she needed Nathan to be breathing on room air before we could go hom. We tried to wean him but he couldn't hold his own. Finally, I said to the nurse that I'd rather just take him home with the oxygen tank than to have to sit in this room and have Nathan restless and unhappy because of all of the other screaming children in the room. She said that it would be easer to wean him than to call the doctor because most doctors don't like sending kids home with oxygen after a surgery. I was ticked because we already have a huge oxygen tank at home, so what was the big deal? Finally, that nurse went to lunch and we had another assigned to us. We told her our plight, all about Nathan's breathing issues, and the fact that the surgery had ended at 9:00 a.m. and we were still still here. She called the doctor and because he was in the operating room again it took him a little while to respond back. He was totally fine with having us go home with oxygen. Stupid first nurse!

Nathan slept the whole car ride home, and then until 5:30 in the evening without making so much as a peep. He was awake until 8:00 p.n. and then was out like a light! He just needed to sleep off the big morning that he had had.

Happy to Be Leaving the Surgical Waiting Room....

2009-03-27T07:33:00.000-07:00

But wishing that they had done the surgery!

Oh, my child is a sly little thing. The pins from his prosthesis caused problems with the roof of his mouth. If they tried to repair the cleft, there is a high likelyhood that it would tear open, and become a bigger problem.

Once again... THAT DARN CLEFT!!!

In the Surgical Waiting Room Again....

2009-03-27T06:58:00.000-07:00

Its hard handing over a happy, content baby (even at 6:00 a.m.) to have an operation. I feel for the poor kid as having your mouth operated on sucks! Isn't he a cute little thing though?

This morning Jake and I were up at 4:30 a.m. to take Nathan up to Primary Children's for his total cleft palate repair and to have the eye doctor implant draining tubes into Nathan's tear ducts. We known since Nathan was 3 months old that these eyes would have to be taken care of, but we put it off because of other, more pressing surgeries. Since we are pushing not to have any more surgeries for a while (pushing off the hernia and the tonsils/adenoids) this is our last chance to combine that with another surgery. There has been some research done to show that children who have been under anesthesia multiple times before age 4 can have some learning disabilities. This may or may not be the case with Nathan, but I'd just as soon combine the few things that we can when we can.

The eye doctor just came in to talk to us. He did have to dilate open the tear ducts, but Nathan has a fistula that may need more involved work later if his eyes don't clear up. Other than that, his part of the operation was very straight forward and easy.

I hate having to sit in the surgical waiting room, especially when our child is never a quick in and out and 3 sets of parents have already been able to leave in the 45 minutes since we've been here. The surgery should last between 3-4 hours if all goes well. I also hate bringing a baby who isn't "sick" this time around. I mean, yes, that cleft has to be taken care of, but it was almost easier in a way to hand him over for heart surgery because he wasn't growing, was turning blue when he cried, and I knew he was slowly suffocating. A cleft is not a life or death operation. However, we will get to spend tonight and maybe tomorrow in the PICU and then a couple of days on the infant surgical medical unit.

I have to send out a HUGE THANK YOU to Ben & Tammy for taking Elisabeth and having her sleep over last night and watching her today. We couldn't ask for better friends than them!

Ellie Funnies

2009-03-19T07:15:00.000-07:00

I had to post an insight into the life of Elisabeth and the difference between Mom & Dad.

Last Sunday evening we went to Kathleen's new town home to check it out and to visit with her. After our visit, Jake and I buckled the kids into their car seats and Jake got in the car before I was done buckling in Elisabeth. He put the car into reverse, which in our car makes the door automatically lock. I hadn't opened the passenger door yet when the doors were locked. Jake unlocked the car and let me in. Here is our conversation that followed:

Jake: Ellie, how would you feel if we left Mom at Kathleen's house to live and you lived with just Dad and Nathan?

Elisabeth: I NEED my mommy. I love her and she helps me with stuff.

Jake: How about if I stayed and lived with Kathleen and you lived with Mom and Nathan?

Elisabeth: (pausing for a second or so) well, Dad we'd miss you!

Jake and I couldn't stop laughing. I have a hard time smiling still because of my surgery and I think I overstretched some muscles because I paid for it the next morning! Kids say the funniest things sometimes.

Spring is Here!

2009-03-18T20:37:00.000-07:00

It finally feels like Spring in Utah and the kids have been loving it! Elisabeth and Addison Hamrick, our neighbor, love to play outside in the driveway together. Today they rode bikes, colored the sidewalk with tons of chalk, blew bubbles, went on a walk, flew kites, and had a picnic together on our grass in front of the house. I really love having Brad, Carlee & Addison living in front of us. They are great friends and its fun that Addy and Ellie play so well together. Nathan also LOVED being outside today. He thought that the car was fun to play in and he would just laugh at the girls when they rode their bikes past him. Its going to be a fun summer with the kids.

Ability, Availability, Dependability, and Capability

2009-03-18T07:29:00.000-07:00

I was talking to my mother in law the other day when we were driving home from my doctor's appointment with the surgeon. We were discussing Nathan and how well he is doing, despite all of his challenges that he has endured. I told her that I wouldn't change the last year except that I hated seeing Nathan suffer through so much. This quote by Neal A Maxwell, an apostle, expresses why.

"God does not begin by asking us about our ability, but only about our availability, and if we then prove our dependability, he will increase our capability." - Neal A. Maxwell

Jake and I are far from perfect parents, but I think that we have matured quite a bit this year and have been refined through this process. I never thought I would be able to care for a medically needy child, but now I can. I've also learned to become more assertive when necessary. And really, I've learned that we aren't given challenges without a way to make it through it. I think that Nathan has made a bigger impact on my life than I have on his. I just wanted to pass that along to Patsy.