Another Sleep Study...

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







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

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

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

The Museum of Science and Industry

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

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

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

Tap, Tap Tap.......

Does this blog actually still function?

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


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

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

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

Endocrinology, Cardiology and Genetics

(I just love Dr. Cowley!)



(Nathan having his EKG)





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

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

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

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



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

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

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

The results of the echo showed:

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

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

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

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

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

Ellie's Tonsilectomy 04/22/2010

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

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

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

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

Going Going Gone!

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

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

Yes Nathan, THEY ARE ALL GONE!!!

CHD Awareness Quilt Project

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

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

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

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

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

What Goes Up Must Come Down...

And what goes in Nathan must come out...

On Nathan's timetable.







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

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

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

What do Marie Osmond and Nathan have in common?

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!