Tuesday, November 25, 2008

Happy Birthday on November 29th

Last year I wrote about everything that had happened in the prior year on my birthday. I think this blog has summed up quiet nicely our little family's happenings for this crazy last year.

Instead of celebrating the big 28, this year I'm going to celebrate 64.

My birthday means quite a bit more to me this year:

On November 29, 1944, a small, frail child was wheeled into an operating room at the Johns Hopkins Hospital for the first attempt to treat tetralogy of Fallot, a congenital heart malformation that robs the blood of oxygen. This life-threatening condition is often signaled by a bluish or "cyanotic" cast to the skin, hence the term, blue baby. The procedure joined an artery leaving the heart to an artery leading to the lungs, in an attempt to give the blood a second chance at oxygenation. It was the first blue baby operation and came to be known as the Blalock-Taussig Shunt.

Without this operation, Nathan's chance of making to age 10 would have been less than 30%. With Dr. Hawkins saying that Nathan's pulmonary valve measured at half of the width necessary to provide adequate blood flow and his other birth defects, I am certain that he would not have made it to kindergarten.

I'm grateful for Dr's. Blalock, Taussig, and Thomas who gave me this gift on my birthday, long before I was ever thought about.

Wednesday, November 19, 2008

Back at Our Home on the Hill

Seriously, we just can't get enough of our home on the hill. What would our life be like without a monthly sleepover at Primary's?

When I got Nathan to the hospital today, the Nurse Practioner was very concerned about Nathan's cold; so concerned that she paged the anethesialogist to come look at Nathan. When he got there, he ABSOLUTELY DID NOT want to have Nathan go into surgery today. It was kinda funny actually. Every anethesialogist that works on Nathan is always a little leery of him. Apparently Tetralogy kids sometimes still wig out in surgery even after their repairs. The obstucted airway issue is also a huge concern. It was actually pretty funny listening the NP who said they were going to cancel the surgery, then the anesthesialogy who came to me and said he was only comfortable with the ear tubes and then the Plastic Surgeon who was saying that no matter what, the surgery was going to be done today. After seen a surgeon and anthesialogist fight? The scene in the surgical waiting room was comical.

Dr. Siddiqi won out; the risk of having Nathan asperate on the pins in the palate prosthesis was greater than the risk of being intubed with a good cold. A lot of extra precautions were taken. Dr. Muntz, the ENT, came in and replaced Nathan's ear tubes. The left ear tube had already fallen out and the right ear tube had come loose and was no longer functioning. Luckily, Nathan's ear canals have grown and so he was able to be given a set of tubes that should last about a year.

The Intern for Dr. Siddiqi came into the waiting room and told me that Dr. Sidiqqi wanted permission to clip the upper gum away from the lip as it was causing Nathan a few problems. I gave them permission and then they also told me I could keep Nathan's old palate device. The Intern said that Dr. Siddiqi said we could just take Nathan home after the surgery. I actually threw a fit and said that because of Nathan's airway issues and that his mouth would be swollen, I wanted him kept overnight for observation as was the original plan. After the operation, Dr. Siddiqi came out and agreed with me that he should be kept overnight.

The post operation area wasn't much fun today. Since Nathan is older and is more aware of things, he was peeved when he woke up. He was given 3 doses Morphine and a dose of Fentanol before he calmed down. I've never seen him come out of an operation that mad! Poor little guy! His cries were so pathetic that he had several nurses besides the one assigned to him come and see this sad little boy! It was easy for everyone to see how much pain he was in.

We weren't transferred into the Infant Surgical Unit until a little after 4:00 p.m. One good thing about Nathan having a cold is that they want him in his own room since its RSV season. I'm glad about it because his roommate has 5 brothers and sister under the age of 7. They were bouncing off the wall when we entered the room. During shift change at 7:00 p.m. they will be transferred to a new room so Nathan doesn't get the other little boy sick! (Hehe, I never was so glad that Nathan was sick with a cold like this before!)

A positive thing about today was that I found out from Dr. Bennett that Nathan has been approved for the Synagis shots. They run about $1000 a shot from what I've been told and have to be given every month during RSV season. I'm elated he'll be getting these since this has been a work in progress with the insurance companies since September.

You know? The day that Nathan was born the on call pediatrician, Dr. Cornish, came in and casually told me that Nathan had a cleft palate. Back then, it was the least of all of the health concerns. This stupid cleft has caused more grief than anyone really told me. It has been a partial cause for the g-tube, ear problems, apnea, swallowing, and more surgical complications than any of Nathan's other "issues". I just have to roll my eyes at the whole thing and remember that hopefully come February things will start to look up for Nathan.

Monday, November 17, 2008

The Official Announcement

Ellie has decided that the only way to get a new brother or sister is to campaign for one. Actually, in her "magical thinking" stage as Grandma Ellinger and Dad calls it she has decided that I am pregnant with a sister for her.

I am here to tell you that I AM NOT PREGNANT!!!

I feel it is necessary to say this because not only did Grandma Ellinger pull me aside a couple of months ago to ask if I had any important news to tell her, but Nicole also called and asked me one day on my way to work. To top it off, Ellie's nursery teachers pulled me aside yesterday when I was picking her up to ask. Ellie has been telling EVERYONE that I am.

I am taking this in strides because I know that I haven't been taking care of myself very well since Nathan was born. But seriously, would anyone believe after Nathan was born with all of these issues that I would just up and have another baby this fast? I've had a couple of girls in the ward ask when I was having another baby because all they see me with is Elisabeth since Nathan doesn't go to church. I keep my mouth shut, but I've decided that's a question that you shouldn't ask people. After all, its a personal thing and every one's situation is different. I sometimes feel like I am drowning under the weight of working full time and being a mom to 2 small children (one with a TON of special needs). Having a 3rd kid in the next 5 years is not part of the plan.

Sunday, November 16, 2008

A Pet Peeve

I love my little girl. I just have to remind myself of that several times a day sometimes....

Ellie has picked up a bad habit and refuses to change it. As we have the kids' doors child-locked, she sees it only fitting when the car stops and its time to climb out to climb into the front seat and get out of the drivers or passengers door. She can't wait 1 minute while I get out of the car to go open the door for her. Her other problem is that since she is in a booster seat, she has an assigned place in the car to sit. She refuses to actually get in the door by her seat; she only wants to climb in over Nathan's car seat (whether or not he is in it!) The problem is that most often he is in it when she wants to pull that stunt!

I hope its not like potty training to get rid of this habit!

Saturday, November 15, 2008

Disney on Ice

(Camera's weren't allowed in, so I swiped a few of these pictures off of the web).

About a month ago when Jake and I were on our "kick" to be a tourist in our own backyard, we bought tickets for Disney on Ice. Originally we wanted to do it because they were doing this sale where you could get $5.00 off each ticket purchased according the the Savvy Shopping Website I liked to use. As soon as those tickets were purchased though, I was just so excited to take Ellie to see her favorite princesses! The best part? We were able to buy tickets on the 3rd row so we could see everything clearly!

Elisabeth and Nathan were both entranced by the show. It is an amazing production that has been put together. The costumes were incredible, the dancers were fabulous, and it was kept on a level so that both boys and girls would be kept interested in what was happening. I have to admit, Jake and I were just as enthralled with it as Elisabeth was! This was one of those awesome parent moments; Ellie didn't let a smile off her face the whole time the show was going! As each new character came out that she knew it was "Oh, they're my FAVORITE!" After the grand finale, all of the characters moved to the side of the ice rink and started shaking the kids' hands. Jake grabbed Ellie and because we were so close, he pushed to the front and Ellie got to shake hands with Minnie Mouse and Pinnochio!

The only bad part of the night was that Ellie was dying to have a toy purchased there. Jake and I didn't want to pay 2 times the amount for a toy than what we could purchase at Walmart so we had to drag her out of the Energy Solutions Arena kicking and screaming. Aren't 3 year olds great? At least Jake and I weren't the only mean parents; I saw a half a dozen other parents doing the same thing and the kids were crying just as loud as Ellie. (Ellie can be such a drama queen though that she can really overdue it sometimes!).

We all were so hungry after the show that we took the kids and went to the Joseph Smith Memorial Building to grab some dinner. We ate at the Garden Restaurant and had Ellie pretend that she was a princess so that she wouldn't eat like the general savage she usually is. I think she's going to be a lot like her dad; she ate some of Jake's Tomato Asiago Soup and loved it! It had a strong taste but was really great. It wasn't something that I would have thought that she'd like. It was a good thing that the restaurant was only half full because after about a half an hour she lost interest in the food and went and sat by the window looking down on Salt Lake and the Temple. All in all, she did really well at dinner time.

My favorite part of the night was walking back through the Visitor's Center at Temple Square. We walked by a picture of the prophet and Ellie said, "Oh! That's President Monson!" Mine and Jake's hearts just melted. She has some pretty great primary teachers! We also talked to her about where Heavenly Father and Jesus lives. She thinks the temple is a castle still, but in her mind that's where princesses live and get married so that isn't necessarily a bad thing! We just have a little more work to do! We plan on taking the kids back in December to see the Christmas lights and also the Cristus.

I love being able to spend time together with the kids and Jake without any interruptions. We had such a great time last night. So good, that Jake and I only got slightly irratated at Ellie for having an "accident" in her pants and having to go to Wendy's to change her clothes. (That just shows that everything can't be perfect!)

Tuesday, November 11, 2008

That Darn Cleft!!!

Nathan, Ellie and I trekked up to Primary Children's again today to have Nathan's helmet status evaluated. When I saw Dr. Siddiqi I mentioned to him that because of my available FMLA time, we would have to move Nathan's original final cleft surgery date from January 7th to sometime in February. The doctor said that would be fine. He looked at Nathan's head and said that it would be ideal if we could keep the helmet on him at night for one more month, but if it was too hard with the BiPap machine, that we could leave it off. As the doctor was getting ready to leave I asked if I would need to see Dr. Yamashiro (the orthodontist who made the temporary prosthesis). Dr. Siddiqi said that he'd take a look at Nathan's mouth and see. We laid Nathan on his lap and when he opened Nathan's mouth, the prosthesis started flopping up and down! I rolled my eyes because even before Dr. Siddiqi opened his mouth, I knew what he was going to say!

"We've got to get Nathan back to the operating room to put that in more tightly."

I'm still wondering if there is a rapid rewards program for the use of the operating room. This will be the 11th time that Nathan has been in the operating room this year! More over, this is the 3rd time that prosthesis will have to be screwed into his mouth!

I'm grateful for a mild mannered baby who still loves me. Its probably because he isn't old enough to know how many times Jake & I've had to sign the consent form to allow Nathan to be operated on!

Mark your calendars! Nathan will be back in the operating room on November 19th for the prosthesis and again on February 9th for the final repair.

Sunday, November 9, 2008

The Imaginary Friend

(I'd post a picture of this, but obviously it wouldn't show much!)

About the time that Nathan was born, Elisabeth concocted an imaginary friend named Alan. Now, Jake and I aren't totally sure where the name came from, but Elisabeth told us one day that she wanted her friend Alan to come over and play. Who's Alan? Aparently she is a little girl with the following attributes:

1. A little girl
2. Age 5
3. Blonde
4. Has a little brother coincedently born on Nathan's birthday
5. Loves barbies
6. Has a dollhouse
7. Frequently is sent to the "Thinking Chair" by her parents
8. Her little brother also lived at Primary Children's
9. Her little brother also had heart surgery
10. Her little brother has a feeding tube
11. Her little brother is named Ian.
12. Loves Polly Pockets and Disney princesses
13. Coincidently was hit by a car the day after Elisabeth was scolded at Primary Children's for running in the parking lot and not watching for cars. She was hit by a car and died according to Elisabeth. However, 2 days later Elisabeth decided that she was resserected and Alan was able to go back and live with her parents.
14. She likes to sleep on the floor in the hall
15. Alan is the mommy to a child that is Ellie's age (not sure how she came up with that one!)
16. Alan's mommy doesn't ever have to go to work
17. Alan's dad is a teacher
18. Alan can carry on lengthly conversations about absolutley nothing. Ellie will talk to her on the phone for hours!
19. Alan goes to school.
20. Alan's birthday is the same as Grandma Ellinger's and Elisabeth

Funny thing but I don't ever remember having an imaginary friend. Of course, I had Janice though. There's something to be said about having a sibling 13 months younger than you!

From what I've been told, Jake had some imaginary friends named Yum Yum and Yuck Yuck. (I'll have to get the full story on that one later and post the details!)

Alan is truly Ellie's best friend. In her own little way, this is Elisabeth's way of trying to understand what is going on in her life and to help her cope with it. I feel bad sometimes for Elisabeth... it can't be easy to have been an only child for 3 years and then suddenly not only have a new brother enter her life, but a new brother with a ton of special needs. I think sometimes she feels left behind when we have to take Nathan so often to different specialists and spend so much time teaching him to roll and talk and eat; things that most babies just pick up on their own. That being said, she has done amazingly well for the most part at helping care for him and be a good big sister to Nathan. Jake and I often joke that if Ellie doesn't kill her brother first, that she is going to be the reason he talks, crawls and eats.

For Christmas, Nathan is going to be asking Santa Claus for the Baby Signing Time DVD's. Its not that Jake and I aren't going to work hard with him to teach Nathan how to make the baa, maa, da etc. sounds... with the cleft surgeries and jaw problems Nathan has yet to make these normal sounds. He will be having a speech therapist come every week to work with him. However, I don't want Nathan to get frustrated in what he wants and I want all of us to be able to communicate better.

Wednesday, November 5, 2008

Minnie Mouse and Little Dinosaur

This year Elisabeth, Nathan, Jake, Grandpa Ellinger and myself went to the trunk or treat. We really missed having Grandma there and hopefully she will feel well enough next year to attend. This was really the first year that Elisabeth TRULY understood what was going on. She made a very feeble attempt to say trick or treat. I think that was mostly due to all of the older kids who came out of the woodworks and would just open their bags and expect candy. She had a really good time though.

Nathan didn't really know what was going on and at first did not want to be in his costume. I woke him up from his nap to go to the Trunk or Treat and he was not a happy camper! However, by the time we got there he was his usually happy self.

By the time that we made it around the cars, Grandpa was on the verge of running out of all of the candy that both Jake & I and he had bought! Ellie proudly gave away the last of the candy to the trick or treaters and then we went back home to show Grandma our cool costumes.

One fun thing that Jake and I did was go back to our old ward in Spanish Fork to trick or treat around the main culdasac. It was so fun showing off Nathan to some of our friends! What was especially fun was that about a month ago I had run into Leslie Walker from our old ward during one of my audits. I had updated her on life and she passed on the information to her husband who is on the high council. Her husband happened to be speaking in our old ward about adversity and so he included us in his talk. There were many ward members who said how great Nathan looked and were happy to see us. I like our new ward, but there was something really special about the ward that we just came from.

By the time we got home at 9:00 p.m., we were all STARVING for real food and tired as can be. Elisabeth had a break down when I told her to take off the costume and she cried about being told to go to bed. Finally she told me she would go to bed. Jake checked on her a couple of minutes later and she had made herself a "New" bed on Nathan's changing table! She had also fallen asleep on top of it! Of course Jake had to grab the camera and take a few pictures!

The only bad part of Halloween is that our plans with Tammy and Ben fell through. Elisabeth was sad that she didn't get to see Kayden! That's ok though, maybe next year we can go with them again.

It was awesome to see Elisabeth in my old Minnie Mouse costume from when I was a kid. She looked adorable (what can I say, I'm pretty biased!).

Monday, November 3, 2008

Look at You Now

I watched this on You Tube this afternoon and it really made my day.

A new country singer, Mark O'Shea, from Australia just moved to Nashville and filmed this heart video at the childrens hospital. Mark was born with TOF and had his repair when he was 6 months old. What's really great is that look at what he's doing with his life and how far he's come. Mark has the same congenital heart defect as Nathan. At the end of the video, there's a little boy named Nathan who years after his repair is dressed up in a baseball uniform and playing ball.

Here's the link:


Here's the lyrics:

Look At You Now

I know it was never easy, when nobody was on your side
Back home where the girls were mean and the boys were high
You'd hear about every party, but you'd have to invite yourself
Sit spending the whole night wishing you were someone else
Living on the outside like you never would fit in
You took your chance with both your hands and baby you showed them

Look at your life like a diamond, look at you shine from inside out
Maybe you took some time to find it oh but look at you now
Baby I never saw it coming, you hit me like lightning from a cloud
Wherever it was that you were hiding, you found your way out
And look at you now

Shy girl afraid of the water, now you're leaving em in your wake
So you fell down seven times but you got up eight

Though I hardly recognized you standing face to face
Your just like a butterfly that's finally come of age…


Seeing you across the street, you almost knocked me off my feet
It's been so long I can't believe it's true, It's you…

Nathan a couple of days after his heart surgery in June.

And look at you now!