My Little Ballerina

I love having a little girl! (Janice - you can still decide to try for another girl after this baby!) Since Jake and I chose not to send Ellie to preschool this year, I signed her up for a ballet/jazz class through Spanish Fork Community School. The cost was $35.00 for 10 weeks of instruction. The class is on Tuesdays at 5:30 p.m. for about a half an hour which is the perfect attention span time for 3 and 4 year olds. We opted for this since I didn't want to pay $50.00 a month for a ballet class where I wouldn't be sure that Elisabeth would participate in all of the time. There were a couple of little girls in the class who were too scared or shy to participate. My co-worker, Stacee Dye, graciously let me borrow the ballet clothes from her little girl that is a couple of years older than Ellie. Elisabeth really got into her first class and absolutely did not want to go home. She makes a cute little ballerina. I loved that when all of the girls were asked to stand on their toes, Elisabeth got her feet higher than anyone else. I hope that she enjoys the class and continues to be excited to attend.

The frantic scurry to fix it; absolutely priceless!

Beware, the pictures below might make some a little queasy!



After conference this afternoon, I was laying on the couch with Elisabeth asleep on top of me. Nathan had slept through the entire afternoon session of conference and so when he started crying I asked Jake to go upstairs and bring Nathan down to me. Jake brought him down to me and I sat him on my chest and started playing with him. Nathan was giggling and being very playful. He saw his feed tube (still attached) and held it up to show me. I looked over at the tv for a moment and then glanced back at Nathan. He proudly held up him feeding tube (and then entire button with it!) I did a double take and sure enough formula was oozing out of his sight and Nathan was pretty happy with himself to be able to get his tube in his mouth without any difficulty. I frantically told Jake what had happened and Stephen (my nephew going to BYU) grabbed Ellie off my lap so Jake and I could go take care of the problem.

The button was deflated and so Jake hurried and found the proper syringe to fit the port and test it to see what had happened. He discovered that the balloon had simply popped! So, we hurried and found our last button on hand and all the supplies to put it back in.

1 Mic-Key 14 French 1.2 cm aprox $450.00
1 syringe $.10
1 cavilon barrier film $1.00
1 iv bandage $.17
1 prescription triamsinalone cream copay $5.00
1 box mefix tape aprox $18.00
1 package q-tips aprox $2.00
1 package Baza Barrier Cream aprox $11.00 (unless you "borrow" a dozen or so from the nurses when Nathan had his open heart surgery. Every new nurse he had during that week we asked for a new bottle since it was so expensive!)
1 Nikon D40 Camera to capture the picture $600.00

The look on Jake's & my faces during the frantic scurry to fix it -

ABSOLUTELY PRICELESS!



And by the way, even though we are old pros now when this button comes out, the GI doctor and G-tube/Nissen doctor have scared us so silly that the wound site will start closing in 20 minutes if there isn't a button or Foley catheter tube inserted at the site that we FRANTICALLY go take care of the problem right then. We don't want to go through an emergency surgery to have the button placed again!

Nathan through up through his nissen this morning for the first time. I felt so badly for him and was grateful that I was right next to him on the couch when it happened. He started choking and so I lifted him up so that he wouldn't aspirate. I know that throwing up was a possibility; he has wretched pretty hard though and this has never happened. It frightened me a little bit.

As for Nathan's growth, most of the concern is that Nathan isn't tolerating his feeds very well still. He is on prevacid, erythromiacin, and periactin (those are phonic spellings!), to help him with motility issues. He still gets a substantial amount of gas (hasn't burped yet through the nissen), and wretches quite a bit. He has been on 22, 24, 27 and 30 calories per ounce formulas, but every time we increase the caloric content, he gets sicker meaning he tries to throw up 2 -3 times per feeding. I know the doctors are all concerned about weight gain because it could be a sign of more heart problems, or other underlying problems with his gut. We've seen blood come out of his g-tube 4 or 5 times since his heart surgery in June. The doctors are also concerned that Nathan shows no hunger signs and could care less if he is fed. We've missed a couple of meals here and there and he doesn't cry if he's hungry. Nathan started life at about the 50% for weight, now he's barely holding on to the chart. He isn't doing much to burn calories either (no crawling, rolling, not even burning calories to feed himself). We're working slowly on increasing the amount he eats, but its just baby steps in that department. I've had all of his doctors in the last month (except cardiology whom we see on Thursday) express concern. They all want to increase his caloric content again but I'm not so hip on that idea! I'd love to be able to show a chocolate milkshake down his tube to help him out; hopefully when Nathan figures out how good they are he'll want to take it by mouth instead!

Any tips for packing on the pounds?

Obviously, Jake & I don't need any additional weight. Nathan, on the other hand, has his doctors all up in arms about getting him to grow. Monday night, Hollie from Kids Who Count, came and weighed Nathan.

Here are the stats:

Weight: 15 lbs 7 oz.
Height: 26 1/2 inches
Head: 44 cm

Hollie chatted with me about Nathan's growth and about other health problems Nathan has been having over this past month. The prelone (steroid) to open up Nathan's windpipe did wonders. However, after his 3 day spurt of meds, he did great for a few days and then things have gone back to where they were. I want to throw my hands up in the air and give up sometimes. Nathan gained a whopping 5 oz this month and has dropped to the first percentile. Hollie said to me, "Aren't you concerned about his growth?" as if it wasn't fazing me at all. I don't know what's up; I just sometimes get the feeling lately from the doctors and others that they think I'm neglecting Nathan. I'm going to be making a phone call to go in and see Dr. Bennett again soon.

Any suggestions or tips for packing on the pounds?

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!

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!

My New Toy!!!

I ABSOLUTELY LOVE IT!!!






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 :)

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!

A Lovely Lady

This picture was taken when I was taking pictures of Nathan sitting up. Elisabeth can be such a character sometimes... she wanted a picture taken all by herself. She is such a cute girl. I can't believe how fast she is growing up!

Nathan is 7 Months Old & Sitting Up!!!

I'm SOOOO EXCITED for Nathan!!! I can't believe that 2 1/2 months after his heart surgery and a month after his cleft palate surgery, Nathan is starting to sit up!!! (If you can't tell, I'm so happy for him... he can't even roll from his back to tummy yet but if he wants a toy he'll sit up to play with it when put in that position). After so many trials, this has been his biggest gross motor development skill he's started to do yet. He does much better without the helmet on (hence why he isn't wearing it in the pictures), but nevertheless he's doing it! We still have a long ways to go, tummy time is better but it isn't perfect yet. His tortocolis still needs some help (the muscles in his colar bone area are weak and tight), and of course there's always that dreaded eating issue....

I saw Carolyn Quigley (IHH President) last Saturday for Mercydez Haw's garage sale and was talking about some of the other families that are still up at PCMC. It really made me realize that if eating and growing are Nathan's major issues now to conquer (as hard as its going to be), WE ARE SO BLESSED. He isn't still up in the PICU and has been home getting stronger and learning and growing with Mom, Dad, & Ellie with him. Before I knew what Tetralogy of Fallot was and how it was fixed, I remember sitting alone recovering from my c-section at Orem Community Hospital wondering if Nathan was going to live and have a normal life. Life isn't going to a breeze for this kid, but the outlook is VERY PROMISING for him. Heavenly Father is truly looking out for us.

Way to go Nathan!