Update on Nathan

Yesterday, before that major snow storm hit, I took Nathan up to Primary Children's for a couple of doctor visits. My neighbor, Carlee Hamrick, was awesome and watched Ellie for me so that I wouldn't have to deal with her during all of Nathan's tests. Poor Nathan is just like his older sister and mother. He gets carsick when taking longer drives. On the way to the hospital he threw up all over his clothes. The nissen doesn't seem to be functioning very well lately. His vomit amounts are starting to look like what you would expect to see out of Ellie; not a kid who shouldn't be able to throw up. I didn't bring any extra clothes with me, so I just wiped Nathan off the best I could and took him into the hospital.

Our first appointment was with the ENT, Dr. Park. Dr. Park is one of my favorite doctors of Nathan's. Nathan had to have another hearing test to see if his ear tubes were working properly. Nathan was having a hard time responding to the lower sounds at softer levels. He did however, pass the hearing test. He's going to be closely monitored so that he doesn't sustain any hearing loss. Dr. Park and I also discussed Nathan's bipap machine. While the results that came back from the titration study were not very favorable, it was still better than what his breathing had been before. Nathan is going to have a few studies done at home to test his oxygen levels with certain pressure points being forced through the machine and also without the extra breath that it forces Nathan to take if it doesn't feel that Nathan is getting enough oxygen. Also, Nathan's tonsils and adenoids are getting bigger. Combined with his severe sleep apnea, Dr. Park recommended that Nathan's tonsils and adenoids both be taken out. We will have to wait until after his cleft surgery because that will take a while to heal and will be too traumatic for Nathan to do it all at once. With the exception of the brain, I'm pretty sure that the doctors are running out of body parts located in the skull to operate on. Actually, Nathan's probably going to be missing teeth when they come in. He'll have to have a few operations for that problem too I'm sure!

We finished our appointment with Dr. Park and then went upstairs to see Dr. Hoffman, the eye doctor. I was glad that we could show up 45 minutes early to the appointment! They quickly got Nathan in to do the tests and such. Nathan was given some drops to force his eyes to dilate. Since he is very fair skinned, his eyes will probably be dilated for the next 2-3 days and we need to keep him from going outside as much as possible. It took about a half an hour for his eyes to dilate and then we were able to go in and see the doctor. He was glad that I had brought Nathan into to see him. Many children with Nathan's symptoms such as Pierre Robin (small recessed jaw), cleft palate, ear problems, and obstructive airway issues also have what is called Stickler's Syndrome. Leah Wheeler, one of my friends from band in high school had two babies born with this syndrome. Luckily, Nathan doesn't not have it. Stickler syndrome kids are extremely nearsighted and often go blind. Nathan is the opposite. He is extremely farsighted.

Hyperopia, also known as farsightedness, longsightedness or hypermetropia, is a defect of vision caused by an imperfection in the eye (often when the eyeball is too short or when the lens cannot become round enough), causing inability to focus on near objects, and in extreme cases causing a sufferer to be unable to focus on objects at any distance. As an object moves toward the eye, the eye must increase its power to keep the image in focus on the retina. If the power of the cornea and lens is insufficient, as in hyperopia, the image will appear blurred. Hyperopia, and restoring of vision with convex lens.



He has always had drainage issues out of his tear ducts. The doctor will perform surgery on that when Nathan is having his cleft surgery in February. He gave Nathan a prescription that we were told to take to the Moran Eye center next door. I did as I was told and we fitted Nathan for glasses. There were only three infant frames that could hold his type of lenses. Two of those frames were too little for his face! It was a hard choice at the point. He actually looks really cute with glasses on. Now keeping those darn things on him is going to be a trick...

I'm thinking that maybe I should take Ellie in to have her eyes checked too. I honestly thought that Nathan could see fine. As I thought about it, he doesn't look at books the way that Ellie used to around that age and whenever we are at Grandma and Grandpa's he always follows us around with his eyes while we are walking. Now tah dah! We know that he can really focus well on objects that are far away! Nathan's glasses will be here after the beginning of the year.

I'm really grateful that he's farsighted and that it doesn't look like for now that he's going to get progressively blind. I feel a little frustrated at times that every time I go to a new doctor's appointment lately that Nathan needs another procedure done, however, I understand that the doctors are being very proactive so that Nathan can develop as closely as possible to his other peers. He needs good eyes and ears to develop language and fine motor skills. He needs his cleft repaired for breathing and eating issues. The heart was pretty self explanatory and as much as I dislike having a baby with a button inserted into his stomach to eat with, Nathan would be having a hard time eating otherwise. I can't believe how much I took for granted having a normal healthy developing child. A healthy baby is truly a miracle and blessing.

Blessings

I have been concerned these last couple of weeks of paying the co-pay for Nathan's synagis shots. Jake and I have savings in the bank, however, in a couple of years if Nathan is not eating by mouth, the limit on our DME supplies will have been met and we would be responsible for the feeding bags, g-tube supplies, etc. We have set aside an account that will pay for this when the time comes. Having aprox $2000 taken from that account would put a decent dent in that savings account!

The Spanish Fork Clinic was given the name of a charitable organization that helps pay the copays for necessary health care supplies/needs. The patient needs to have serious healthcare needs and the copays must meet a certain amount. The family's yearly income is also taken into consideration. The clinic gave us the phone number and I applied for help. Turns out, we qualified within the income limits and the RSV shots are part of one of their funded programs. They will completely cover our copays until May for Nathan.

We are very fortunate and blessed. This is the first time the clinic said that a family has been able to get assistance in this area through them. The organization is located back east.

Every day I see how Heavenly Father is watching out for us. He gave us Nathan and He also gave us a way to pay and care for him. Nathan does not want for adequate medical care. Where there are great trials, there are also great blessings.

Nathan's Titration Study

Last night Nathan and I drove up to Primary Children's again and spent the night in the sleep lab. The point of the exercise was to reevaluate the settings on Nathan's BiPap machine and to make sure that he was getting enough oxygen at night. I have to admit, I was SO TIRED since I'd gotten up at 5:00 a.m. to clean the kitchen that by 9:30 p.m. last night I just wanted to crawl up on the floor and go to sleep. I started Nathan's feeding pump after he was connected to all of the probes. The nurse came in about 45 minutes later to wake me up to turn off the pump that had been alarming! Oops. (What can I say? It's exhausting to be a mom!)

Nathan didn't cry at all when they hooked him up to all of the probes. He was a little irritated when they put the oxygen mask on him, but since he's used that machine at night for 2 1/2 months, this is becoming old news to him. The technicians both commented that they both drew straws to see who'd have to hook Nathan up because babies this age HATE that process and are mobile enough to start ripping things off. There was another baby there last night a little younger than Nathan. He screamed for an hour and a half straight while Nathan had a smile on his face and was contently playing with his g-tube and oximeter. The tech was quite pleased with herself for "losing".

I need to interject here and say that Nathan is the easiest going baby I have ever seen. I needed him to be that way with all of his other issues!

We'll get the results back in about 2 weeks. On the 19th of December we are seeing Dr. Park (ENT) and Dr. Hoffman (eye doctor). Then its off to our first vacation with Nathan to see Great Grandma Ellinger in Sacramento!

Ellinger Family Christmas Party 2008

The Ellinger Family Christmas Party was held on Saturday, December 6th, at Grandma and Grandpa Ellinger's house. We had such a great time this year! Everyone brought a potluck item and we held the usual family talent show, played the chimes, sang Christmas carols, and had a visit from Santa Claus. The highlight of the evening actually came in 2 parts: Grandma Ellinger's BEAUTIFUL pajamas that she made all of the grandkids and the chime sets that Grandpa made for each family. We are so lucky to have grandparents like this. I've come to love and appreciate Jake's parents as much as my own.

This year for the talent show Jake showed everyone how to extract DNA from split peas, Ellie sang "Jesus Wants Me for a Sunbeam", Kiki did a ballet dance, Mallory & Libby showed their art, Kristin baked fabulous cookies, and Kathleen sang. Grandma showed her talent of sewing!

I love that in the Ellinger clan, Ellie has cousins that are her age. I miss having Janice so close and not being able to share the holidays with her! Maybe next year..

Hopefully too, Eric, Sheena, Maryn, and Baby McMurdie will be here as well next year. Ellie has been asking when Maryn is coming again. She is very excited that Maryn is having a baby brother just like her! Coincidentally, Alan, Ellie's imaginary friend, just moved to Texas and now lives by Maryn. (I think that means we need to find some time to go visit them!)

Ellie's Ballet Recital

This recital was actually on November 18th, but with Nathan's emergency cleft surgery and Thanksgiving, I'm just getting around to posting the pictures.

Ellie was such a cute little dancer! I think that being only 3 years old, she has done very well with this class. I have to remember that the class was for 3 and 4 year olds and that Ellie is only 3 instead of 4 as she was actually the tallest girl in the class! She has a tendency to get a little distracted, but she loved being in this class. When the community class sign ups come around again in January, Jake and I will be enrolling her again with that teacher. If Ellie still likes ballet in a couple of years, I'll shell out a little more money than $35.00 for 12 weeks of instruction. I just can't choke down $50.00 - $60.00 a month for a 3 year old to take lessons!

Polar Express

On December 4th, Jake and I took the kids up to Heber City to ride the Polar Express. It was so much fun! Grandma and Grandpa Ellinger had also bought tickets to go with us, but since Grandma didn't feel very good that evening, Aunt Kath went in her place. It was such a fun experience; Elisabeth has been reading the story and watching the DVD for weeks in anticipation of this event. We sat at the back of the train car and ate hot chocolate and cookies made by Mrs. Claus. The story of the Polar Express was also read and Elisabeth listened very quietly to the narrator. The elves on the train came and visited with Ellie several times asking what she wanted for Christmas and telling jokes to her. Ellie didn't let a smile off of her face the whole time that we were on the train. The ride was made to look and feel as close to the story as possible. We traveled by the damn and could look over the water (which looked like the polar ice cap in the story). Midway and Heber cities could be seen in the distance. The sight at night was breath taking!

Santa Claus visited our train car in the middle of the car singing Christmas carols. At first he stopped by Jake and asked if he had been good this year. Then he went straight to Ellie and handed her the first bell. She was so excited that she had gotten to be the child who was given the "First Gift of Christmas" just like the boy in the story.

Ellie can be a little pill sometimes; very headstrong and stubborn, just like both of her parents. Jake and I find it very frustrating sometimes to raise her. When we go on activities like this where we can be a part of the action and look at it through her eyes, we find it very rewarding to be her parents. I think that Jake and I were more excited to take her on this trip than she was to go! This is definately must do again activity in the future!

Our New Winter Hats

These pictures are for Janice. She made these cute hats for the kids and sent them for Christmas. Elisabeth absolutely loves hers! Nathan, well, he's still trying to decide if he actually wants to wear it or not. (I can't blame him, most of the things on his head have not been of a positive nature.) Thanks Jan for the cute gifts!

My Jewels

The First One

Nathan had his first RSV shot today and he screamed like the nurse had just cut his arm off! She actually put the shot in his leg since he has very little fat on his arms or bum. Nathan may not have liked it, but I see it as necessary insurance.

Having the shots approved by the insurance company has been somewhat frustrating, but at least we had an excellent pediatrician pulling for us! I had been misquoted about the price of the shot, its actually around $2500.00 a shot and has to be given every 28 days through the spring. I'm sure the insurance company loves the $12,500 they are paying for the shots for Nathan. It doesn't come to us without a price tag though. Our co-pay is $500.00 a shot. The first time I heard that I wanted to scream and act like someone was cutting off my arm! We're in the process of getting some financial help to offset the copays. We'll see if that happens.

I don't think that socializing medicine is the way to go, but something should be done to make health care more affordable to everyone.

Biter Biscuits

I promise that I will take a picture of this when I get a chance but I wanted to post another major milestone for Nathan. Last week when Jake and I went to Walmart, Jake suggested buying some biter biscuits for Nathan to try. I was a little apprehensive since the biscuits are so big and Nathan's mouth is so tiny! Jake convinced me though that we still needed to give it a shot. On Sunday we gave one to Nathan to try. He took it in his hand and played with it. Finally, Jake took it and pretended to put it in his mouth. He then gave it back to Nathan to try. Nathan took it back and after a couple of minutes actually brought it to his mouth! He really liked the taste of it and kept gnawing on it. He didn't actually bite any of it or really swallow, but he at least got the idea of bringing food to his own mouth by himself. We are making baby steps in this department, but we are progressing none the less. I can't wait to show Mary on Friday!

"I Wasn't Supposed to Tell You That"

Quick funny story....

Wednesday night before Thanksgiving, Elisabeth and I were at the counter making pies. Jake had just walked out of the house to take the garbage outside. I was talking and joking with Elisabeth when this came out of her mouth:

Ellie: "Mom, Dad bought you a purple IPod for your birthday!"

I gave her a "look" like huh?

Ellie: getting a fearful looking on her face..."um... I wasn't supposed to tell you that!"



It was too funny! Now, Jake didn't think it was all that funny because he hasn't ever been able to surprise me with a birthday present since we've been married. For example, the first year we were married he gave me this beautiful picture of the Manti temple and hid it underneath the couch so I wouldn't find it. One night before my birthday we invited my nieces and nephews over to watch a movie and play games. They moved the couch to make room and I found the picture! Last year, I REALLY wanted a new bathrobe so I could walk around the hospital without showing the world my all. I found a really great deal and bought one online. Turns out, Jake had also bought me a bathrobe! Oops. He told me about it the day before my birthday. Hopefully Jake will have better luck next year!

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.

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.

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.

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!

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!)