Sunday, September 28, 2008

Baby Blue Eyes

I just have to add a quick picture of Nathan's eyes. I absolutely love them! They are always so expressive and these days usually full of excitement. Nathan's eyes are truly baby blue!

September 6, 2008 - IHH Fun Walk/Run

Jake and I belong to this AMAZING Group called Intermountain Healing Hearts. This group is for those with congentital heart defects and their families. All of the heart defects are so different with each of these kids, but there are so many people in the group who are honestly concerned with each other's welfare. Jake and I have met some of our best friends through this group and honestly, this has been one of the blessings thrown at us in the midst of Nathan's problems.

On September 6th, some of the Ellinger family participated in the fun walk/run fundraiser the group had. Jake and I were so excited that Kathleen, Dad, Shawn, Kristin, Libby & Mallory could join us. Next year we are hoping for even more to come and support us and Nathan in the cause. Next summer there is going to be a retreat for families of heart kids. The group is earning money for that and for CHD awareness week during the week of Valentines Day. There is also a website that the group has a forum on for members to ask questions or to get support during a difficult time. I've said it a thousand times before but I'll say it again, its very comforting to be surrounded by people who know exactly what you are going through.

September 12, 2008 - Nathan's Sleep Study

On the 12th of September, Nathan and I made the trek up to Primary Children's again to have a "sleep" study. Kristin and Shawn were extremely sweet and let Elisabeth sleep over that night since I would be gone with Nathan and Jake had to get up extremely early the next morning and go to Utah Valley University and take the Praxis test to be able to teach 8th grade science in Utah.

Nathan and I got up to Primary's about an hour before our actual appointment and so we went to visit and friends Elaina and Hollie. Hollie was just on her way out the door, but she spent a couple of minutes talking with me about what the study would be like also a little about her sweet baby girl. Elaina is such a doll; she just needs to get out of that hospital! She has been hospitalized since April. Originally she was diagnosed with Tetralogy, like Nathan, but her heart has many more nuances and she was diagnosed with DiGeorge Syndrome. Nathan and Elaina have many of the same issues and so its been wonderful to have a good friend like Hollie to talk with. She says she's grateful by the support that has been given by others; little does she know what a support she has been to me!

After chatting with Hollie, I took Nathan down to the sleep study lab and got him dressed in his jammies and gave him his medicine. That is when the real fun began. Nathan was fairly mellow about having his head covered, until the cap went on. He began to fuss and the nurses commented that of all the babies that they've had to do this to that he was the most mild mannered about it. I was able to get Nathan to sleep by 9:30. It didn't take long for him to start crying in his sleep (like always). He also tried to pull off some of the leads. The nurse kept having to pop her head in every half and hour or so until about 11:00 p.m. That is when Nathan's oxygen levels kept decreasing and constantly stayed at or below 85. The nurse ended up sticking him on oxygen and then the adding an extra cannula in his mouth to read the CO2 levels better. Meanwhile, I had my own blanket and pillow on a pullout couch. I don't think I got more than 2-3 hours of sleep that night. I can honestly say though that Nathan's sleep wasn't too different from his sleep patterns at home.

As I write this post (2 weeks after the fact), I got the news back from the ENT that Nathan has severe constrictive sleep apnea. We are going to be seeing the ENT again soon and are now adding a sleep doctor to the circle of our closest friends at Primary's.

As this is going to be a journal of sorts at the end of the year, I'm writing down Nathan's doctors.

Cardiology - Dr. Collin Cowley
Cardiothorathic Surgeon - John Hawkins
Gastroenterologist - Dr. Molly O'Gorman
Dietician - Sharlene Coombs
G-tube/Missen doctor - Dr. Earl Downey
ENT - Dr. Albert Park
Plastic Surgeon - Dr. Faizi Siddiqi
Orthopedic Speciality (helmet) - Shield's Orthotics (they have 2 doctors that see Nathan)
Orthodontics - Dr. Dwane Yamishiro (cleft prothesis)
Genetics Doctor: Dr. David Viskochil
Speech Therapist (Primary Children's) - Helena Taylor
Speech Therapist (Kids Who Count) - Mary Walker
Primary Care Pediatrician - Dr. John Bennett
Sleep Doctor: ???

Hmm... this circle of "friends" is growing a little bigger than I would like. No wonder we are up at Primary's an average of 4-5 times a month ever since Nathan was released from the NICU on March 22nd!

Thursday, September 25, 2008

The Babysitters Club

Ok, I know that I haven't posted anything substantial this last month. It has been incredibly busy; I have taken Elisabeth, Nathan, or myself to different doctors appointments 10 times this month. This was on top of the IHH fun run, 4 straight weeks of auditing in the field (two weeks in Delta), a pampered chef party, carpet cleaners, dinner with our high school friends at Los Hermanos, arranging the transformation of our backyard, getting Elisabeth into a community ballet class, and finally keeping up on Nathan's daily normal needs. I also spent a night with Nathan at Primary Children's doing a "sleep study" (neither Nathan nor I slept that well). I have great pictures of everything and not much time to post! So I promise later that I will actually take a couple of hours and update everybody with everything.

One of the best things that Jake and I have accomplished this month is setting up a babysitter's club in our ward. First off, there aren't many young women in our ward to begin with, but the ones that we have are so busy! If its not soccer, there's ballet, piano, drill, school activities.... the girls just don't have time to babysit. Jake and I feel like we need time to get away from our stress and to remember why we liked each other enough in the first place to get married. There just hasn't been much time for us to go do things by ourselves in the last 8 months without the kids. I was talking to Kristin a couple of weeks ago and she told me how her and Shawn are involved in a babysitting club in their ward. We liked the idea so much that we've set up our own group in our own ward. This is how it works:

We've invited the Okerlunds, Hamericks, Hansen's, and Shumways to participate with us. We are going to take turns watching each other's children while they go out on dates. For example, on October 3rd, Jake and I are responsible to watch all of the other couple's kids while the other couples go on dates with their spouses. We have selected Friday nights as date nights and are having this group every other Friday night. The couple in charge takes the kids from 6:30 - 9:30 p.m and is responsible for making dinner for the kids and making sure that they are taken care of. By babysitting for one night, Jake and I now have 4 nights in the rotation where we can go out and do something by ourselves. In mine and Jake's case, going out by ourselves is a relative term. Nathan will generally be going with us or we will be asking Kathleen or Grandma to watch him every now and again for us. Only Lisa Hansen, who finished her degree in nursing, actually feels comfortable with caring for Nathan. I'm going to take a Friday during the day and teach Lisa what there is to know about Nathan's care.

We're super excited about this arrangement! Everyone in the group is going to have one rotation and then we are going to reevaluate it and make any necessary changes. We've also set a few general rules about sick kids.

I remember as a young preteen reading the babysitter's club books. With this stage of life, this is going to be way better than that club!

Friday, September 5, 2008

My New Toy!!!


So Jake and I have been working very hard at increasing our food storage. We've bought lots of wheat but had nothing to grind it with. We looked at buying a hand grinder and an electrical grinder for emergencies, but everything was so expensive and was more than we really needed for our family. Jake and I have both been wanting a Bosch kitchen mixer since seeing Heidi's and Jake's parents'. When we found out we could buy an attachment that had both the hand grinder and an electric grinder in one we knew that's what we wanted.

We splurged. I guess that's the whole point of this post and I'm excited. To me, this is much better than the big screen tv with a blue ray player and Direct tv with the DVR attached that's sitting downstairs in the living room. (This is much more practical :)

Tuesday, September 2, 2008

Thanksgiving Point Dinosaur Museum / "Ur, em..... You Can Go In Now?

Last Tuesday night Jake and I decided to take the kids to the Dinosaur Museum at Thanksgiving Point. They were having the $2.00 Tuesdays during the month of August and so we thought it would be fun to go see what was up there.

Elisabeth absolutely LOVED the exhibit and all of the "hands on" activities that they had to do. It was crowded, but she was excited to see and do EVERYTHING. Nathan, on the other hand, pretty much slept the whole time. Dinosaurs just aren't his thing yet I guess. After we got thru the museum, we took Ellie & Nathan over to the Ice Cream Parlor and shared a HUGE ice cream sundae which was so YUMMY. Even Nathan had a try of the ice cream. He wasn't too sure about the temperature of it, but at least he tried to swallow!

The funny thing of the night happened as we were entering the exhibit. Apparently absolutely no food or drink is allowed in the museum. They had a 17 year old boy standing by the entrance where he had confiscated 18 - 20 water bottles, sippy cups, etc. I hadn't noticed the sign stating the policy and so when the boy asked if we had food or drink with us, I pointed to Nathan's backpack which had his feeding pump in it. Nathan was connected to the pump and in the process of being fed. This was our conversation:

Him: ABSOLUTELY NO FOOD OR DRINK is allowed. You're going to have to leave that with me hear and come back and get it later.

Me: Um, he's eating right now.

Him: I'm sorry, you can come back for the backpack LATER.

Me: (Holding up the backpack with the tube hanging out leading to Nathan) (also nodding to this boy like he's three years old) HE'S EATING RIGHT NOW. THIS IS CONNECTED TO HIS STOMACH... WOULD YOU LIKE TO KEEP THE BABY FOR A COUPLE OF HOURS?

Him: (doing a double take not fully understanding what I had just said)(then suddenly his eyes got HUGE and his face looked SURPRISED)... (I was still holding up the backpack and pointing to the tubing for him at that point).... Ur..................em.......................... (about 30 seconds later)....."You can go in now?"

I so wish I would have had a camera! His face was absolutely priceless! That's the one time that having a baby with a G-tube certainly had its benefits!