Thursday, December 24, 2009

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.

Monday, October 26, 2009

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.

Nathan's Coping Mechanism in the PICU

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!

Friday, October 23, 2009

We're Home!

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.

Monday, October 19, 2009

Wouldn't An Uneventful Surgery Have Been Nice?

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

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

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

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

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!

Thursday, October 15, 2009

A Quick Little Update

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.

Sunday, September 27, 2009

Oktoberfest 2009

"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...

Saturday, September 26, 2009

Its Already Started...

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?

Friday, September 25, 2009

Walk for Healing Hearts

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!