Monday, March 30, 2009

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!)

Saturday, March 28, 2009

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.

Friday, March 27, 2009

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!

Thursday, March 19, 2009

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.

Wednesday, March 18, 2009

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.

Monday, March 16, 2009

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!).

Pictures of Ellie's New Room

From what started as an "I think I want to paint Ellie's room for her birthday" became a little more of a project than I had imagined. I had fun working on it though (Jake says I can't paint for a LONG TIME now). I'm really excited about the way that it turned out! I wouldn't have picked yellow for the walls, but Jake was once again the master mind behind the paint and did a good job. If you can't tell, Target, IKEA, and Pottery Barn are where everything came from. The bedspread, flooring, lamp, bean bag, wall peelies, drapes, and closet organizers all came from Target. The flowers which are her night lights came from IKEA and the book shelf on the wall above the bean bag came from Pottery Barn. Instead of going to Seattle for work, we used the money from that to purchase Elisabeth's furniture from the Getaway in Payson. It has the look of Pottery Barn without the price tag. I like the simplicity of her furniture and I think that it will grow with her. What I really like about the room is that Ellie is using her bean bag area as a reading corner and because the storage is labeled and everything has a bucket to go in, she knows how to clean her room. She has done a pretty good job of keeping everything picked up like she should. We have yet to paint the closet doors and so that is coming, but that is all we have left to do in that room. I wish I had gotten a degree in interior design, although my accounting degree has proved to be more beneficial. I have way more fun decorating than I do working as an auditor!

Before and After Pictures of My Jaw Surgery

I can see why the maxillo facial surgeon called this major surgery, because this was a little harder to recover from than I had previously thought. I went to the doctor on Monday morning (March 9th) which was 1 week post op. I was so sick and could hardly walk straight. I was in tears when I called the doctors office and they got me right in. Its a good thing they did because 3 pokes for an iv line and 2 bags of iv fluid later I started to feel a little better. It turns out I became dehydrated over the weekend and had made myself pretty darn sick. The doctor put in the iv in himself and the first two tries my veins collapsed. I have two huge bruises on the inside of my arms by my elbows from where the blood went into the tissue. They look like 2 hickies and are both about the size of a quarter!

These pictures were taken the morning of my surgery. When I came out of surgery, Jake said I look liked I had just gone through brain surgery. My head was completely wrapped and plugs where in my nose to keep them open for oxygen.

These pictures were taken 1 week post op. The swelling had actually started to decrease a little at that point. The bruising wasn't as bad as I expected, but the surgeon told me I was one of his most swollen patients that he has had.

I can't wait to get back to eating normal foods! 2 weeks down and at least 4 weeks to go before I can start on solids (I feel like a 4 month old baby). I have been reading cookbooks in an effort to find some soups I could puree that wouldn't be too bad, but as I read the other items things like crab salad even sound heavenly though I normally wouldn't touch it with a 10 foot pole!

I went to see Dr. Lunceford, an internist, today for my regular checkup and a pap smear. I had bumps and welts all over my arms and on the inside of my legs. I guess that Mom and Elisabeth aren't the only ones who are allergic to penicillin. I got those genes too! I have been on an antibiotic for these last two weeks to prevent any infection from entering my mouth since I can't brush my teeth. Thank goodness I won't be taking that anymore!

Everyday things get a little bit better for me and I plan on going back to work in 1 week. I owe a big thanks to everyone for helping so much with the kids!

Sunday, March 15, 2009

Angel Mercydez

Our dear friend, Mercydez Haws, passed away this morning. She was such a beautiful spirit and her parents have been such an example of faith to us. I first met Ashley at a lunch for the parents of children in the NICU at Primary's. I remember the first meeting, finding out that they lived in Springville and that both children were born with heart defects and variations of clefts. Ashley was so upbeat and positive about life, even though Mercydez's challenges were far greater than Nathan's. Mercydez was also a g-tube/nissen baby like Nathan and it was so nice to be able to get advice/ swap reports of how to deal with a feeding pump and all of its quirks.

The world lost one of its most valiant spirits this morning. We mourn her loss, but know that she was welcomed without hesitation to her Heavenly Father's arms. She will be missed greatly.

We love you Nic, Ashley, and Mercydez!

Saturday, March 7, 2009

My Upper and Lower Jaw Surgery

What a week, and can I just say what on earth was I thinking? I had my upper and lower jaw surgery at Utah Valley Regional on Monday with the surgeon saying that I would probably only have to stay 2 days in the hospital. I actually came home (and didn't step into the house) until 7:00 p.m. on Friday evening. I feel pretty weak and look, well, lets just say that a mug shot of a person in jail generally looks better than I do.

To say that my face is swollen is the understatement of the year, but I'm starting to feel a little better. Yesterday morning my pulse was recorded at 34 and I having this weird sense of vertigo. Since the entire top of my jaw was moved forward, my nose has been bleeding quite a bit and when its not bleeding, it drips like a 2 year old who doesn't know how to wipe. Its strange, but I can't feel most of my chin, lips, and cheeks. When I get feeling a little stronger, I'll post some before and after pictures.

I appreciate all of the help that has been given to us this week! Especially to my wonderful in-laws who have stepped in to help with the kids as much as possible. I don't know what I would have done without them.