Memories

1. Leave a comment on my blog, leave one memory that you and I had together. It doesn't matter if you knew me a little or a lot, anything you remember!
2. Next, re-post these instructions on your blog and see how many people leave a memory about you. It's actually pretty funny to see the responses. If you leave a memory about me, I'll assume you're playing the game and I'll come to your blog and leave one about you.

General Update On Life

This afternoon I took Nathan to his 6 month well child visit. I didn't hear anything different than I expected to; he's behind in his gross motor skills and almost where he should be with his fine motor skills. What I was really grateful for Dr. Bennett to say is that although moms like to compare their children against the easier things to see like sitting up, rolling over, walking etc. that those things don't truly show how smart your child is. The fine motor skills focus more on intellect and as long as he keeps up closer in that department we're gonna be ok. Nathan needs a lot of stretching on his neck muscles; the tortocolis doesn't seem to be getting any better. We're going back to see Dr. Bennett in another six weeks for a weight check and general look over for his muscles. Nathan weighs in at a whopping 14 lbs 10 oz and is 25 inches long. He is in the 10 percentile for both height and weight and you know what? That's perfectly fine. I'll get lots of mileage out of his clothes unlike his sister's wardrobe! He's growing right along that growth chart and I'm happy with it.

I didn't post about what happened last week with Dr. Siddiqi, the plastic surgeon, at Primary Children's. We saw him on the 15th of July and he told us that since he was going to be out of town in August starting on the 24th that he wanted to get Nathan right in to get started on his cleft. Jake and I were really surprised about it being that quick but from a cardiology standpoint he was ok to go. Nathan was supposed to be scheduled for Monday, July 21st for his surgery. We called on Friday afternoon to find out the specifics and the same day surgery had no record of him being on the list! I was IRATE! We hunted down Dr. Siddiqi and then had Nathan put on the schedule as an add on on Tuesday. Nathan was taken into surgery at 5:30 p.m. Tuesday to have the repair done. He was not a happy camper after being starved all day long! The surgery went really well from all standpoints. An ENT, Dr. Muntz, was called in to evaluate Nathan's ears and place tubes in them. (Jake said I put way too much emphasis on having those tubes in Nathan's ears but I didn't care! Nathan's had fluid in them too long and was on his way to ear infection after ear infection!) Anyway, Jake and I stayed the night in Salt Lake while Kathleen graciously watched Elisabeth overnight. The next morning we came back to the hospital to find that as the surgeon had done his rounds, Nathan's prosthetic device had come loose and was flapping in his mouth! Long story short, but Nathan was added AGAIN as an add on and ended up in the operating room at 5:30 Wednesday night. Jake had class and so I sat in the surgical waiting room all by myself. I also stayed in Nathan's room overnight. The next morning instead of going to the 24th parade in Spanish Fork, Jake and Elisabeth came up to the hospital to pick us up! We hung around the hospital until almost noon before we were discharged, but thankfully it didn't come loose again!

Every day is an adventure with Nathan! We almost end up planning for the worse outcome each time we go up to PCMC! Ironically his heart surgery has been the surgery that has had the least complications! Go figure! That, though, has probably been the biggest blessing of all!

Angel Isaac

Yesterday morning I checked the website for the IHH website for an update as to Nathan's heart friends. We have gotten to know several of these families and the struggles that they are going through. Like I was telling Jake's mom, its nice to be able to talk with people who really understand what you're going through. For example, I was able to talk to a couple of different mom's about what it felt like for them to hand their babies over to Dr. Hawkins knowing that a heart/lung bypass machine was keeping their baby alive while their child's heart was intentionally stopped to be repaired. The understanding, love, and empathy shared by this group with all of its members is almost like the love shared by immediate family members. One family in particular, the Brimley's, have had an especially difficult trial. Their son, Isaac, was born in January a few weeks before Nathan. He was born with the the congenital heart defect of HLHS, which basically means he was born with only half a heart. His parents extended themselves to EVERYONE in the group with warm welcoming hugs and visits to others in the hospital. While Nathan was in the PICU after his open heart surgery, Isaac was in the room next to him in the quiet corner where the heart kids are kept. Jessica and Paul made a special point to come and visit Nathan and talk with us. They made us feel so important and loved, even when their child was fighting for his life. Isaac was able to go home for 9 days and then he was brought back to the PICU for increased problems. On Saturday night he returned home to our Father in Heaven.

I can't imagine what they must be feeling. Its hard to understand why some children with CHD's are allowed to stay and others are taken home so quickly. I held Nathan most of the day yesterday and had a hard time leaving him to go to work this morning. I also spent some time last night laying awake and wondering what my mom must have felt when Beth passed away. The reality of how fragile life really is hit home quite hard last night. Our thoughts and prayers are with the Brimley's as they go through the grieving process. Isaac was a fighter and will surely be missed by all who loved and knew him.

We Want/Need Your Help!!!

Jake, Nathan, Elisabeth & I belong to a group called Intermountain Healing Hearts, which is a heart group for children that have undergone or will undergo heart surgery for a congenital heart defect (a defect that is present at birth). This group and its members have been very supportive when Nathan had his surgery and because a lot of the kids with heart defects also have other issues (like Nathan)its been very helpful to be able to ask questions about how other families deal with their day to day trials. This group isn't very old (I think it was formed last year)but its membership is already well past a hundred families. Most of the kids have been hospitalized at Primary Children's Medical Center at one point or another. I cannot tell you how much these strangers have had such an impact on our lives in the last six months. We follow some of the other heart kids and cry for babies who become "angels" that we haven't ever met personally but are fully aware of their stories. We have such a strong bond with these families and their friendships are priceless!

So here's the deal: They are having a fun run/walkathon on September 6th. There have been a lot of people who have asked us how they can help Nathan. This is how: please fill out a registration form and send it in to participate in this event. The money helps this group provide care bags to its members. They are also hoping to be able in the future to provide monetary support for those members in serious need. Now, if you don't want to participate because you feel funny about it or are too far away, Jake and I are asking for donations that we can give one HUGE donation in behalf of Nathan. I know with gas prices and all that its hard to squeeze out extra money, but every little dollar helps.

Don't make me call and beg you for a donation, because I support this group so much that I will! Let me shed a little light on this for you; Nathan's hospitalization bill for only 6 days in the hospital for his open heart surgery has come close to $150,000. We haven't seen all of the bills come in yet either. Fortunately for us, I'm employed by the state and we hit our max out of pocket shortly after Nathan's birth so it didn't cost us a dime. What a blessing though this could be to others!
It also takes money to hold a group like this together and there is no other support group out there for families dealing with these AWFUL experiences in Utah. They need your help! So, Ellinger clan - I will be asking everyone for help at the family reunion if I haven't heard from you before then. Larson family - I will call each of you personally if I don't hear from you by mid August. Tammy - I really, really want you to come with us to this!

Like I said, every little dollar counts if that's all you think you can donate. If you have any other friends or anyone else that might be interested, please ask as well. Send me an email to: ellingerfamily@gmail.com if you wish to donate anything or plan on participating.

Thanks!

Nathan's Six Month Pictures and True Blue BYU

After we put the BYU sticker on Nathan's helmet we thought it would be pretty cool to have professional pictures taken of him in a BYU outfit with a football too! We bought the shirt and football from the bookstore. When Janice came, I thought it would be fun to have Nolan's and Nathan's pictures taken together since Nolan just turned 1 and Nathan was turning 6 months. Then last Saturday while at Sam's club we saw an adults BYU shirt for Jake that was inexpensive so we bought him one. Elisabeth had a darling BYU outfit given to her by Grandma and Grandpa Ellinger at Christmas but since she is growing faster than the weeds in our backyard it shows her belly button when she wears it! I went back to the bookstore and bought another shirt for her (a kids size 4-6!) as well as pom poms and a headband so she could be in the picture too! I had to bribe Jake with a promise to go out to dinner and movie by ourselves in the next couple of weeks, but at least I got a picture of my family! I wish that we could have gotten a better picture of the Y on Nathan's helmet, but after 45 minutes of wrestling with Elisabeth and Nolan, Nathan was done before he ever really got started.

Janice and Tammy asked me the other day if they had asked or said anything about Nathan that had offended me. That made me realize that I hope I didn't hurt any one's feelings. I want everyone to know that our family and close friends aren't the problem... really I was just venting about an experience that shouldn't have happened in the first place if the person who had said it was actually thinking about what she was saying instead blowing things way out of proportion. I guess too that sometimes since I'm dealing with these problems in my own personal way that I get a bit overly sensitive. I think that I'm doing pretty well for having watched my child go through 3 surgeries with the 4th coming up on Monday, having to teach my child to eat through his mouth instead of a tube, working on physical therapy with him, dealing with digestion problems, and trying to treat him as a normal baby while still giving Elisabeth the attention and love that she needs. I think I hit my breaking point last weekend. Anyway, I apoligize.

Kayden's Birthday Party and Venting

This weekend we had so much fun! Janice and Don came from Illinois to visit us for a couple of weeks. (Don is only staying on the weekends and has to work in California during the week.) Kayden turned 4 and had a birthday party for all of his friends to come and swim in the kiddie pool and jump on the trampoline. The adults sat in the front yard under the cool maple tree and had a good time just catching up on what was happening in every one's lives. Tammy and Ben made yummy kabobs and afterwards we all indulged in creating and eating ice cream sundaes. These are my favorite kinds of birthday parties to attend: low maintenance and the kids still had a great time. Elisabeth gave Kayden a remote control backhoe and was so proud of picking out a toy just for him.

I do have to vent a little here... we brought Nathan along for the party since he has been doing so well from his open heart surgery. Since Nathan has a helmet to reshape his head from spending half of his life lying on his back in a hospital bed he tends to stick out a little bit. One of the moms at the party saw me feeding Nathan from his G-tube and saw how I had to "vent" his bubbles from his belly. Most people are a little taken back by this (I've decided the vast majority of the world isn't ready just yet to see that). She said that she had a niece who also had a g-tube. She then went on to tell me that the niece is in a vegetative state and began telling me all about her problems. I was so grateful listening to her that Nathan's problems are nothing in comparison to that. Then out of the blue she started comparing Nathan to this girl in which the only similarity they had was having to eat through a g-tube! I was flabbergasted! What floored me was when she asked, "Is Nathan ever going to be normal and talk and walk and eat through his mouth?" and when I said yes she followed up with, "How many more surgeries is he going to have before he's NORMAL?" I need everyone to know this: Nathan's future outlook is VERY GOOD. Yes, he's going to need his pulmonary valve replaced in the future and NO, we don't know when. Yes, he has a cleft palate and yes, he will need to have a couple of surgeries to fix that so he won't have food coming up his nose every time we try to give him something through his mouth. No, Nathan doesn't have any neurological problems other than having to deal with an overprotective Mother and a sister who "loves" him sometimes more than she should. No, he didn't have/or need brain surgery and yes, he is going to likely struggle a little with speech. Yes, SOMEDAY he won't have a button in his stomach and yes, Nathan likes some food. Yes, Nathan is only the size of a 4 month old baby and yes, he does have chubby cheeks and looks totally normal. Yes, he will always be followed VERY closely by a cardiologist but that doesn't mean he can't be the starting pitcher for the Boston Red Sox. No, he's likely not going to be a quarterback for BYU, but hey, baseball is the better sport anyway. But you know what? He's going to live just as normal of a life as his older sister. So I'm asking everyone to please think about what you're saying in regards to Nathan before you actually say it. Some of the things that have been said to me in ignorance have really started to bother me. Most of the time I just forget about it because they have no idea what I've been through and I usually don't want to give the hour explanation of what happened to Nathan these last 5 1/2 months. I know I should just brush it off, but this last encounter really, really hurt. Most of the people who read this blog aren't the problems, what I'm saying though is think before you speak even to strangers because you have no idea what they are dealing with.

I'm really excited that Janice, Brennan, & Nolan are here for a couple of weeks. It will be nice to be able to go and do a few fun things with Janice. Tomorrow we are going to see Dr. Sidiqqi (the plastic surgeon) for details on repairing Nathan's cleft. I'm hoping that we'll have some good information tomorrow about what the future plans are going to be.

Ellie the Dancing Princess

The other day Elisabeth pulled out my dance costume from when I was her age. She insisted that she put in on and dance around the house like a princess. I had to laugh at her; she really gets "into" pretending these days and was very serious about herself being a dancing princess. I wish that I could find the picture I have of me wearing this when I was her age, but alas its still in boxes somewhere in the scrapbook room. The outfit looks pretty darn good considering its 25 years old now! I have just let her put it in with the rest of the dress up clothes that we have in the toyroom.

Kayla and Elisabeth

This post is for Kayla who wanted a picture of her on my blog! Kayla and Elisabeth are 2 peas in a pod. Ellie idolizes her and Kayla is more than happy to take her under her wing and make Ellie feel special. I don't want Kayla to get a big head over this, but I hope that Ellie turns out like Kayla has. Kayla is an awesome softball and basketball player and is usually a pretty good help to her parents. She is an awesome babysitter for us when she has time! These two share a special bond and I hope that Kayla realizes that Ellie is watching her and is wanting to be exactly like her!

The 4th of July

We had such a fun 4th of July this year! Brian and his family, as well as Heather and Jessica (my nieces) came over to our house to BBQ, play croquet, and swim. Brian was the brave one and ventered into our back yard to start up the grill. Jake was out there for a couple of minutes and managed to get stung by a wasp. It turns out that the wasps had made their home in our grill and that Brian should have taken Jack Black's character on Kung Fu Panda! There were moves that he was making that none of us had even seen Brian do before! The food was tasted great though and we all sufficiently stuffed ourselves silly.

Afterwards we went to the Cottages Park and played Extreme Croquet. Jake and Brock teamed up together to try to beat Brian, but their divide and conquer strategy was no match for Brian's ultimate croquet skills! Brian and his family make even the most mundane game an adventure. Since it was so hot, we came back to our house and played the Wii (Guitar Hero III) while some went swimming. I loved Guitar Hero even though I was terrible at it! After everyone was done swimming and playing the Wii we had rootbeer floats to finish the day.

Its fun to have Brian, Cari and their family so close to us! As Cari jokingly said to us, they are the only ones that aren't embarrassed to be with us! (We know that they can't live without us!) It's important to have good relationships with your family members because at the end of the day, they are still the ones that want to be with you. I feel lucky to have such a great brother!

A True Blue BYU Cougar!

I took Nathan on Thursday, July 3rd, to pick up his helmet from Shield's Orthotics in Salt Lake. The first time it was put on his head he screamed! Can you blame him (the helmet is pretty heavy for a baby his size)? Hopefully he will only have to wear it for about 3 months or so. Jake and I couldn't let Nathan go around with an ugly helmet on his head so we spruced it up a bit by adding BYU decals on it. We are also going to add little stickers for every goal that we achieve with him (like they do on the football team for academics, service, and team work). We're hoping that we can add lots and lots of stickers in the next couple of months. We also bought Nathan a little BYU t-shirt and a football. Now, with Nathan's heart he isn't likely going to be playing football for BYU but the Y should't put up too much of a fuss for letting him in the school. With the two scars down Nathan's jaw and 1 scar down the center of his chest for his heart he has a "Y" scar that he'll be wearing the rest of his life. How much more dedicated can you get than that? Jake wants me to take Nathan and have a few professional pictures taken of him in his new BYU attire. When I get around to getting that done, I'll put some better pictures up.

I Like to Eat........ well almost!

I'm blogging this for Janice to whom I owe a HUGE thank you to! Jake put together the high chair that Janice bought for Nathan when she came out when he was born. What I love about it is that I can keep him distracted and he seems to forget that something is going in his mouth! He will take 8-9 teensy tiny bites (probably equal to 2-3 normal baby sized spoon fulls), but that is progress. We're finding that he doesn't mind food necessarily, its the swallowing that he is really struggling with. We're glad that Dr. Sidiqqi (the plastic surgeon) is on our up and coming appointment list. We're seeing him on the 15th of July to have Nathan's cleft reassessed and to hopefully set a date for the next surgery. I'm really going to push having Dr. Albert Park place tubes at the same time in his ears so as to eliminate another seperate surgery. Jake and I are hoping that when Nathan's cleft is temporarily repaired that Nathan won't struggle so much with getting food down and will start taking larger portions. The ultimate goal is getting rid of that button! So thank you Janice for giving us such a great present to work with Nathan on his feeding skills. You're the greatest!