What do Marie Osmond and Nathan have in common?

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?

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...

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!

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...

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

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..

Lack of a Creative Post Title for the Dog Visit

Thank Goodness for Janice

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)

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.