San Francisco

On Saturday, April 18th, we drove to San Francisco to show my niece, Erin, around. We made the mistake of not finding the best parking spot and ending up walking from Pier 15 to Pier 39 and then on to the Cannery and Ghiradelli Square. Oh we were so tired when we got there! Jake had bought baseball tickets to see the Giants play the Phillies and so we had to hop on a trolley and ride the metro system to get back to the opposite side of town. Nathan sqealed in delight when the trolley started and everyone on the car looked at him. I had several comments of "look how cute that little boy is" and the infamous question: "How can they tell a baby that age needs glasses?". I wish that we would have had 2 or 3 days to spend there, but alas, this is the second time in our marriage we've had to do San Francisco in a day! Remember the first time Kath? The oxygen bar... racing back to get on the ferry on time? Freezing in the morning and then by the evening wishing I hadn't brought a sweater to carry? That was such an awesome day!

We had fun at the baseball game and we all were fried. My nose is still peeling from a week and a half ago! Jake loved taking his son to his first professional baseball game and explaining to Ellie that she is going to be like Kayla and play softball. Jake patiently told Ellie all about the positions and how someday he hoped that Nathan would pitch for the Red Sox (its a long shot but like Ryan Shupe's song says "Dream Big"!).

What an amazing and fun day. We can't wait to take our next family vacation to Seattle in June!

Water Babies

Nathan and Ellie are both an Aquarius! We bought Nathan his first swimming suit (which drowns him and is size 6-9 months). I love that they make the suits that have a shirt with it too and that this year it is to cool thing to buy. Its great at hiding the g-tube and awesome at keeping the sunburns under control. We bought Ellie a regular swimming suit, but I also bought the cover because she wanted to be like Nathan and I love how modest it is.

On Friday afternoon while Grandma Ellinger was napping, we went back to the hotel to go swimming. Nathan LOVED splashing in the water. He would laugh and laugh every time he hit his hands to the water. Ellie thought it was great to go swimming in the "cold" tub and the hot tub. We need to take both of them swimming at the clubhouse more often!

Visiting Grandma Ellinger On April 17, 2009

Over Spring Break, Jake and I decided to go and visit Grandma Ellinger in Sacramento. It was a LONG car ride, but I'm grateful for the car dvd player. I'm not sure what Elisabeth sees in the movie "Bolt", but it kept her pretty occupied. We made a ton of potty stops on the way and even Ellie decided she'd rather hold it then have to stop at the side of the road to use the bathroom.

On Friday morning we went to see Grandma. It was so good to see her! She loved looking at the kid's scrapbook pages and hearing all about our adventures with Nathan. She asked lots of questions and was in such a happy mood.

The best part of the morning visit with her was that she was able to hold Nathan. He LOVED sitting on her lap and when he was given his favorite BYU blankie, he held it and fell asleep on Grandma's lap. I think she really enjoyed holding a baby and she was thrilled that Nathan was comfortable with her enough to fall asleep on her. That made our trip! We really wanted Grandma to meet Nathan and he was so sweet that morning with her.

Its easy to tell that Grandma is slowing down and that she isn't able to walk or function for herself. She does have some dementia, but she has a good long term memory. She remembered that we hadn't been there to see her in 3 year. (What can I say, its been a BUSY three years for us!) We spent the last 3 years helping mom when she was sick, going to graduate school, Jake getting his bachelor's degree, dealing with Mom's passing, buying her home, having Nathan... and then spending 15 months of surgeries, hospital stays, numerous doctor appointments... I think she understood but we should have been better.

We spent an hour and a half that morning with her and then went back for dinner that evening. The kids had a harder time in the evening as they were both extremely tired. We took Grandma for a walk around the grounds and then took her back to her room. She asked so many questions about Nathan's health and was truly concerned about him. She laughed at the jokes and loved hearing about the time that Ellie peed on the grass after getting her bike last summer. She truly loved being around and seeing her great grandchildren. We also went back for an hour on Saturday evening and left Elisabeth with Erin at the hotel. Both Jake and I wish that Grandma were closer. It was hard to visit her and have to leave her behind. I'm not even her blood grandchild and I was in tears for having to leave her.

Maybe it was because we watched mom pass away for a year, but it wasn't that weird or hard to be around Grandma. Elisabeth did well around her for the most part too. I'm not sure what our vacations will look like for the summer, but I'd like to go back again for a visit.

Preview of Our Trip to Northern California

"Mom, Are You Done Taking Pictures YET?"

Nathan's Cardiology Checkup

I have to say first that I LOVE Dr. Cowley. He seems to be the only doctor that hasn't come up with a list of additional problems for Nathan at every check up we go to!

Nathan's heart is doing wonderful. He does have a very soft murmur, however, Dr. Cowley feels that Nathan could very well make it to be a young teenager before he needs another heart surgery. Wouldn't that be awesome! We don't have to see cardiology for 1 WHOLE YEAR! For other heart moms, you know what a big deal this is. Its a sign of stability and life becoming a little more "normal" (whatever that word really means these days).

I'm sad to think though that due to Dr. Hawkin's illness (which we have been asked to give Dr. Hawkins privacy and time to deal with before blogging to the whole world about it), he won't be around at that time when Nathan needs another heart surgery. Dr. Cowley said that we were very fortunate to have him work on Nathan because of his skill. Dr. Cowley believes that it was Dr. Hawkin's magic who has helped make it possible for Nathan's heart to be doing so well despite his other "issues" we are dealing with.

Way to go Nathan!

We Have A New Date

For Nathan's cleft surgery...

May 1st

This had better be the last cleft palate surgery ever for this child. (I'm sure the insurance companies are thinking that too!)

An Explanation For Yesterday

So the reason that Dr. Siddiqi didn't perform the surgery was because Nathan has a prosthesis in his mouth that is held in by 2 pins that go first through the device and then up into the tissues in his mouth. There is no way that the doctor could tell that there were any problems with the tissue until he actually took out the prosthesis, which can only be done under anesthesia because they have to use a drill to unscrew them out of the mouth. When Dr. Siddiqi took out the prosthesis, he noted that the pins had substantially irritated the skin surrounding the site and so he felt that if he tried to repair the cleft yesterday that the irritated skin when pulled and sewn together would begin to tear since it had not had an opportunity to heal properly. I will have to call his office on Monday to reschedule the procedure. We have to wait at least 3-4 weeks before we can try this again. Its wierd looking inside Nathan's mouth to see the open cleft again (we haven't seen it since July of last year).

When Nathan woke up from the anesthesia yesterday he was mad! Mad is an understatement of the year. We spent almost 2 hours in the PACU (the first place you are taken after an operation) because he kept desating into the 60's. He was intubated for the surgery (which he hates) and was given enough "happy juice" for a 3-4 hour surgery. When he finally calmed down a little we were taken to the Post Operation waiting area. Poor little guy just wanted to sleep but he hates it when he has to have oxygen so he kept figiting with it. The nurse told us that she needed Nathan to be breathing on room air before we could go hom. We tried to wean him but he couldn't hold his own. Finally, I said to the nurse that I'd rather just take him home with the oxygen tank than to have to sit in this room and have Nathan restless and unhappy because of all of the other screaming children in the room. She said that it would be easer to wean him than to call the doctor because most doctors don't like sending kids home with oxygen after a surgery. I was ticked because we already have a huge oxygen tank at home, so what was the big deal? Finally, that nurse went to lunch and we had another assigned to us. We told her our plight, all about Nathan's breathing issues, and the fact that the surgery had ended at 9:00 a.m. and we were still still here. She called the doctor and because he was in the operating room again it took him a little while to respond back. He was totally fine with having us go home with oxygen. Stupid first nurse!

Nathan slept the whole car ride home, and then until 5:30 in the evening without making so much as a peep. He was awake until 8:00 p.n. and then was out like a light! He just needed to sleep off the big morning that he had had.

Happy to Be Leaving the Surgical Waiting Room....

But wishing that they had done the surgery!


Oh, my child is a sly little thing. The pins from his prosthesis caused problems with the roof of his mouth. If they tried to repair the cleft, there is a high likelyhood that it would tear open, and become a bigger problem.

Once again... THAT DARN CLEFT!!!

In the Surgical Waiting Room Again....

Its hard handing over a happy, content baby (even at 6:00 a.m.) to have an operation. I feel for the poor kid as having your mouth operated on sucks! Isn't he a cute little thing though?








This morning Jake and I were up at 4:30 a.m. to take Nathan up to Primary Children's for his total cleft palate repair and to have the eye doctor implant draining tubes into Nathan's tear ducts. We known since Nathan was 3 months old that these eyes would have to be taken care of, but we put it off because of other, more pressing surgeries. Since we are pushing not to have any more surgeries for a while (pushing off the hernia and the tonsils/adenoids) this is our last chance to combine that with another surgery. There has been some research done to show that children who have been under anesthesia multiple times before age 4 can have some learning disabilities. This may or may not be the case with Nathan, but I'd just as soon combine the few things that we can when we can.

The eye doctor just came in to talk to us. He did have to dilate open the tear ducts, but Nathan has a fistula that may need more involved work later if his eyes don't clear up. Other than that, his part of the operation was very straight forward and easy.

I hate having to sit in the surgical waiting room, especially when our child is never a quick in and out and 3 sets of parents have already been able to leave in the 45 minutes since we've been here. The surgery should last between 3-4 hours if all goes well. I also hate bringing a baby who isn't "sick" this time around. I mean, yes, that cleft has to be taken care of, but it was almost easier in a way to hand him over for heart surgery because he wasn't growing, was turning blue when he cried, and I knew he was slowly suffocating. A cleft is not a life or death operation. However, we will get to spend tonight and maybe tomorrow in the PICU and then a couple of days on the infant surgical medical unit.

I have to send out a HUGE THANK YOU to Ben & Tammy for taking Elisabeth and having her sleep over last night and watching her today. We couldn't ask for better friends than them!

Ellie Funnies

I had to post an insight into the life of Elisabeth and the difference between Mom & Dad.

Last Sunday evening we went to Kathleen's new town home to check it out and to visit with her. After our visit, Jake and I buckled the kids into their car seats and Jake got in the car before I was done buckling in Elisabeth. He put the car into reverse, which in our car makes the door automatically lock. I hadn't opened the passenger door yet when the doors were locked. Jake unlocked the car and let me in. Here is our conversation that followed:

Jake: Ellie, how would you feel if we left Mom at Kathleen's house to live and you lived with just Dad and Nathan?

Elisabeth: I NEED my mommy. I love her and she helps me with stuff.

Jake: How about if I stayed and lived with Kathleen and you lived with Mom and Nathan?

Elisabeth: (pausing for a second or so) well, Dad we'd miss you!


Jake and I couldn't stop laughing. I have a hard time smiling still because of my surgery and I think I overstretched some muscles because I paid for it the next morning! Kids say the funniest things sometimes.

Spring is Here!

It finally feels like Spring in Utah and the kids have been loving it! Elisabeth and Addison Hamrick, our neighbor, love to play outside in the driveway together. Today they rode bikes, colored the sidewalk with tons of chalk, blew bubbles, went on a walk, flew kites, and had a picnic together on our grass in front of the house. I really love having Brad, Carlee & Addison living in front of us. They are great friends and its fun that Addy and Ellie play so well together. Nathan also LOVED being outside today. He thought that the car was fun to play in and he would just laugh at the girls when they rode their bikes past him. Its going to be a fun summer with the kids.

Ability, Availability, Dependability, and Capability

I was talking to my mother in law the other day when we were driving home from my doctor's appointment with the surgeon. We were discussing Nathan and how well he is doing, despite all of his challenges that he has endured. I told her that I wouldn't change the last year except that I hated seeing Nathan suffer through so much. This quote by Neal A Maxwell, an apostle, expresses why.

"God does not begin by asking us about our ability, but only about our availability, and if we then prove our dependability, he will increase our capability." - Neal A. Maxwell


Jake and I are far from perfect parents, but I think that we have matured quite a bit this year and have been refined through this process. I never thought I would be able to care for a medically needy child, but now I can. I've also learned to become more assertive when necessary. And really, I've learned that we aren't given challenges without a way to make it through it. I think that Nathan has made a bigger impact on my life than I have on his. I just wanted to pass that along to Patsy.

Elisabeth's, Libby's & Mallory's Dance Recital

Elisabeth, Libby and Mallory had their dance recital on Thursday, March 12th. It was so fun to be able to have Libby and Mallory go to class with Ellie! It was fun to see how different their personalities are, especially when it comes to dancing. Libby (correct me if I'm wrong Kristen) was the best dancer of them all. She was the most graceful and obedient in doing what the teacher asked. On the other end of the spectrum was Elisabeth. Its not that she was a bad child by any means, but she wasn't really into the "dancing" aspect of the class. She thought the whole thing was a race to see who could finish first and who could slide across the floor on their knees the best. She also danced a little more like Frankenstein than a ballerina. Its a good thing that not this summer, but the next, she will be old enough to start playing baseball or soccer. She's an athletic kid, but maybe not so much a ballerina! I don't have any regrets about putting her in ballet though because she is with other kids and had to learn how to follow instructions given by someone other than she's related to. The teacher is doing a condensed 3 week class this summer, and I'm thinking of putting her in it again to give her something to look forward to.

A special thanks to Kristen and Shawn for buying the girls flowers for this special occasion! Elisabeth thought it was so cool to be given flowers for the first time. We also appreciated Kathleen and Grandma and Grandpa Ellinger for coming to watch the girls perform their dance routine.

Just Hanging With the Kids

I wasn't feeling like a human being after coming home from the hospital, so Nicole came over to help with the kids during the day. I was so grateful for her help! Both of the kids adore her and we are so blessed to have her care for the kids! While I was folding laundry in Nathan's room on the floor everyone came in to play. I had to take a picture of my silly kids and especially of Nathan's hairdo! I'll be sad when I go back to work next week after this little "vacation" (ha!).