Monday, June 30, 2008

A "Scar" Upon Thars Part 2

These are what Nathan's scars look like now.... from the heart surgery and drain tubes that were placed to the G-button and jaw surgery. What Jake and I think is the craziest is that the jaw surgery scars are worse than the open heart surgery scar. Its hard to tell from the pictures below but the jaw scars are thicker and aren't healing quite as nicely. Dr. Cowley, before looking at Nathan's chart, looked at Nathan's chest and immediately said he knew that Dr. Hawkins performed the surgery. It looks great! When Nathan is older and comparing scars with other little boys, he's going to have a leg (or chest!) up on the others! He is one lucky little boy to be alive and as healthy and happy as he is.

Sunday, June 29, 2008

Oh what do you do in the summertime?

Now that life is calming down somewhat, Jake and I made a decision that this weekend we'd let Nathan actually experience a little of what life is about. On Friday I had the luxury of getting off a few hours early. I called Tammy and decided that we were going to go to Cold Stone Creamery and get ice cream with the kids and then go to the park by the library in Spanish Fork. The kids loved the ice cream, especially Carlee and Elisabeth who were also interested in my ice cream after finishing their own. Kayden is not an ice cream kid and was more content just sitting on the floor and chatting at Nathan. We went to the park and discovered it was WAY TOO HOT to play on the playground. The plans were changed and we went to Tammy's to let them jump on the trampoline with the sprinkler on underneath. They were in heaven and it was great to be able to sit and chat with Tammy. I'm so glad that Elisabeth and Kayden are such good buddies; they play together so well most of the time. Elisabeth doesn't like to be told what to do and is somewhat of a taddle-tale now, but other than that they get along great!

Jake and I took Nathan & Elisabeth to a picnic at Canyon View Park on Saturday night with a few of our friends from high school and then on Sunday Nathan made his big debut at church. He actually did really well at church and really only fussed through the first couple of minutes of Sunday school. I took him and walked out to the car to get a blanket. I had no sooner put the blanket on him when he took hold of his thumb and soothed himself to sleep. He slept all through the rest of the meetings. It was wonderful! (Unfortunately, I know what is coming in the future as he gets older!) Five months is such a sweet age!

Friday, June 27, 2008

"Yes, I know Heavenly Father loves me"

Whenever I hear the song of a bird, or look at the blue, blue sky...
Whenever I feel the rain on my face or the wind as it rushes by...
Whenever I touch a velvet rose, or walk by a lilac tree,
I'm glad that I live in this beautiful world...
Heavenly Father created for me.

He gave me my eyes, that I might see
the color of butterfly wings.
He gave me my ears that I might hear
the magical sound of things.
He gave me my life, my mind, my heart,
I thank him reverently.
For all his creations of which I'm a part.
Yes, I know Heavenly Father loves me.

Nathan is recovering so well from his heart surgery! He is starting to act like a totally different little boy. He doesn't turn blue when he cries and I can pick him up underneath his arms even though he just had surgery 3 weeks ago yesterday. I find that so amazing! He doesn't need oxygen anymore (the second hole put between Nathan's top two chambers is letting the heart function properly). He is even trying to start pushing himself up on his side! In my mind, it is a true miracle. I know this operation has been performed a ton of times on a lot of different kids, but with all of Nathan's other health problems it is amazing to me that there weren't any other serious complications. Jake and I are so grateful for Dr. Hawkins skills and for Dr. Cowley's concern and kindness.

I will post pictures of Nathan's scar in the next couple of days. Like I said, as far as from a heart standpoint he is doing awesome!

My New Window "Seal"

Sunday evening, June 22nd, Jake's parents came over to eat dinner with us and to enjoy some raspberry shortcake. Jake and I wanted to make a roast, but we haven't yet learned the fine art of cooking that for 2 adults. We ate dinner and then went downstairs to enjoy watching TV and visiting. I'm not sure how we got on the conversation, but we started talking about grammar problems that people in the family make. Jake's Dad brought up the fact that Mom calls it a window "seal" instead of a window sill. Jake thought it would be funny to demonstrate to his mother exactly what she was saying. As you can tell from the pictures below, Jake makes an awesome window "seal".

I also caught some a picture of Ellie enjoying her new toy room watching a movie. We all thought it was so funny that at 3 1/2 she's starting to show a few teenage traits, such as saying to us, "OK, WHATEVER" and leaning back in her chair to watch a movie. Jake & I are going to have our hands full with that girl! Another funny thing she did was go upstairs and put herself to bed on our floor with her pillows and a blanket. I didn't want to post a picture of this on the Internet so I am posting the modest version. Ellie had decided that since her underwear was dirty (we still are working on wiping good enough) she couldn't wear it. She didn't have any clean underwear in her drawer so she choose not to put any on at all. Her mentality even went so far as "Since I'm not putting on underwear, I won't put on any clothes at all!" I put a pull up on her and gently slipped her into a nightgown without waking her up. I'm glad that Ellie is starting to think for herself, even if she has a few STRANGE ideas.

My New Window "Seal" Isn't he a cutie!

Ellie going from 3 1/2 to 13.

Thursday, June 26, 2008

A "Scar" Upon Thars

One of my favorite all time books is the Sneetches by Dr. Seuss. I believe that this applies to all of us in some way or another.

Bellies With Stars THE SNEETCHES
by Dr. Suess

Now the Star-bellied Sneetches had bellies with stars.
The Plain-bellied Sneetches had none upon thars.
The stars weren't so big; they were really quite small.
You would think such a thing wouldn't matter at all.
But because they had stars, all the Star-bellied Sneetches
would brag, "We're the best kind of Sneetch on the beaches."

With their snoots in the air, they would sniff and they'd snort, "
We'll have nothing to do with the plain-bellied sort."
And whenever they met some, when they were out walking,
they'd hike right on past them without even talking.

When the Star-bellied children went out to play ball,
could the Plain-bellies join in their game? Not at all!
You could only play ball if your bellies had stars,
and the Plain-bellied children had none upon thars.

When the Star-bellied Sneetches had frankfurter roasts,
or picnics or parties or marshmallow toasts,
they never invited the Plain-bellied Sneetches.
Left them out cold in the dark of the beaches.
Kept them away; never let them come near,
and that's how they treated them year after year.

Then one day, it seems, while the Plain-bellied Sneetches
were moping, just moping alone on the beaches,
sitting there, wishing their bellies had stars,
up zipped a stranger in the strangest of cars.

"My friends, " he announced in a voice clear and keen,
"My name is Sylvester McMonkey McBean.
I've heard of your troubles; I've heard you're unhappy.
But I can fix that; I'm the fix-it-up chappie.
I've come here to help you; I have what you need.
My prices are low, and I work with great speed,
and my work is one hundred per cent guaranteed."

Then quickly, Sylvester McMonkey McBean
put together a very peculiar machine.
Then he said, "You want stars like a Star-bellied Sneetch?
My friends, you can have them . . . . for three dollars each.
Just hand me your money and climb on aboard."

They clambered inside and the big machine roared.
It bonked. It clonked. It jerked. It berked.
It bopped them around, but the thing really worked.
When the Plain-bellied Sneetches popped out, they had stars!
They actually did, they had stars upon thars!

Then they yelled at the ones who had stars from the start,
"We're exactly like you; you can't tell us apart.
We're all just the same now, you snooty old smarties.
Now we can come to your frankfurter parties!"

"Good grief!" groaned the one who had stars from the first.
"We're still the best Sneetches, and they are the worst.
But how in the world will we know," they all frowned,
"if which kind is what or the other way 'round?"

Then up stepped McBean with a very sly wink, and he said,
"Things are not quite as bad as you think.
You don't know who's who, that is perfectly true.
But come with me, friends, do you know what I'll do?
I'll make you again the best Sneetches on beaches,
and all it will cost you is ten dollars eaches.

Belly stars are no longer in style, " said McBean.
"What you need is a trip through my stars-off machine.
This wondrous contraption will take off your stars,
so you won't look like Sneetches who have them on thars."

That handy machine, working very precisely,
removed all the stars from their bellies quite nicely.
Then, with snoots in the air, they paraded about.
They opened their beaks and proceeded to shout,
"We now know who's who, and there isn't a doubt,
the best kind of Sneetches are Sneetches without."

Then, of course those with stars all got frightfully mad.
To be wearing a star now was frightfully bad.
Then, of course old Sylvester McMonkey McBean
invited them into his stars-off machine.
Then, of course from then on, you can probably guess,
things really got into a horrible mess.

All the rest of the day on those wild screaming beaches,
the Fix-it-up-Chappie was fixing up Sneetches.
Off again, on again, in again, out again,
through the machine and back round about again,
still paying money, still running through,
changing their stars every minute or two,
until neither the Plain- nor the Star-bellies knew
whether this one was that one or that one was this one
or which one was what one or what one was who!

Then, when every last cent of their money was spent,
the Fix-It-Up-Chappie packed up and he went.
And he laughed as he drove in his car up the beach,
"They never will learn; no, you can't teach a Sneetch!"

But McBean was quite wrong, I'm quite happy to say,
the Sneetches got quite a bit smarter that day.
That day, they decided that Sneetches are Sneetches,
and no kind of Sneetch is the BEST on the beaches.
That day, all the Sneetches forgot about stars,
and whether they had one or not upon thars

As I looked at Nathan's different scars from all of his surgeries, I couldn't help but think of this poem last night. I've heard from countless different people, "Nathan must be a pretty special little guy to have endured all of this." Its true, he is special and I think that he does have a special reason he came to this earth to be a part of our family. I'm sure I will learn a lot from him! On the other hand though, he's really no more special than Elisabeth. He just has different challenges, that's all. His scars show physical struggle but don't encompass any emotional problems or other problems that don't show a physical sign of pain. I'm finally learning that I can't compare my children at all. They are both unique in their strengths and experiences. They are both growing and learning at their own rate and came with completely different personalities! I love Ellie for her humor, her sensitivity to feelings (especially when I'm crying), and her zest for life. Life isn't going to hold a dull moment for her! Nathan is much more laid back and passive. He's extremely curious about his hands and the people around him. He is going to have more physical challenges than his sister but he doesn't seem terribly affected by it. He is content with the moment. Don't get me wrong, its still hard not to remember that Ellie was 18 pounds at 5 months and Nathan is barely 13! Its what I know as a parent. But my resolve is to not compare them to each other.

As some of you know very well, having a child with physical problems comes with very unique challenges. That doesn't make that child any more loved than the other children you have. It just makes one appreciate diversity.

So the poem should really end as:

But McBean was quite wrong, I'm quite happy to say,
the Mothers got quite a bit smarter that day.
That day, they decided that Children are Children,
and no kind of Child is the BEST on the beaches.
That day, all the Mothers forgot about scars,
and whether their child had one or not upon thars.

Tuesday, June 24, 2008

Back to the Mundane

Jake and I decided at the end of last week that since I am going to be having jaw surgery in the fall and Nathan is going to begin having his cleft palate repaired that I needed to come back to work on a full time basis earlier than I wanted to. Originally I had planned on returning back to work on June 30th, but since even the best laid plans change I started back yesterday. I was comfortable going back to work knowing that Jake would be taking care of Nathan and Ellie. Who better than their own daddy would do such a good job? Jake is figuring out that it isn't easy to stay at home with the kids, but I think that he actually doesn't mind it. On Sunday evening before I came back to work, we worked on a schedule of exactly what needed to be done with the kids at exactly what time of day. It made us realize how much work Nathan is. We also realized that if we worked it right, that Ellie would be getting the one on one attention she needs too.

I am constantly wishing that I were home with Nathan and Ellie instead of working. It always goes back to the great debate: proverty and a junky neighborhood or a nice home with good schools. As Kathleen can attest, a teacher's income barely can purchase a condo these days; not a home for a growing family. I also have a vested retirement with the state which would help us tremendously in our later years.

Jake and I are considering the possibility of having a live in nanny that could take our extra bedroom downstairs and be paid a stipend. Tonight we are going to start interviewing people also for possible in home daycare arrangments. Our biggest problem is that Nathan doesn't just need a diaper bag at the moment to go places. He also needs his pump and attachments as well. It would just be easier all around to have someone come to our home. So, if anyone knows anybody who would be up to sitting, please let us know. I want the very best care for my little boy because he needs a lot of extra attention! I also want someone who is going to love my children and not just tolerate them. Its going to be a tall order to fill.

At least since I have to go back to work I have an excellent job with a wonderful manager and coworkers. No one in my office plays office politics and everyone gets along. I'm in charge of my own work and the pace that I work on it. My day always ends at the same time and I NEVER work holidays or weekends. I can also call in sick in the morning and I'm not putting anybody off by doing so. How much better can it get? SO, I'm back to the mundane and grateful for what I have and not worrying so much at the moment about what I don't. I'm working hard to be a good mom to my children in the evenings and the days I have off. I guess at the moment I'm doing the best that I can.

Saturday, June 21, 2008

An inside look at the button

Tonight I noticed that the bandage around Nathan's button was stained red. I took off the dressing and put him in the tub to carefully wash the button area as well as his head and bottom. When I had him back on the changing table I decided to check the water content of his balloon inside the button. He was in a happy mood and was playing with his hands. I took a syringe, put it to the port and withdrew the water from the balloon to check the level. Sure enough as I looked at the syringe it was on the lower side. I went to fill the balloon back with water when Nathan turned to his side and the button popped out of his stomach! I freaked out because although I was totally prepared to put it back in sometime in the future, I wasn't expecting it to pop out like that. Juices from the stomach started oozing out and draining down his front. I panicked!!! Jake came upstairs and told me to just put it back in. I gave him the "Are you nuts?" look but did as I was told. I tried to stick it back in gently but it just wouldn't go. Finally I gave it one good jab and it popped right back into place. We got fresh water to fill the port and finally had it attached to Nathan again. It was disgusting; the balloon was yellowed in a lot of areas and also contained a deep red color around most of it. We're sure that within the month or so that the button will have to be replaced with a new one. I'm sure we'll do the famous paper, rock, scissors duel to decide who the lucky one is that gets to put it in. One good thing about it is that when it comes out on accident again, we'll be prepared. Every day is a new adventure for our household!

Friday, June 20, 2008

Someone Call the Fashion Police!

One might say that Elisabeth, in her very independent stage, could use a little fashion advice. Wow, that is such an understatement! Tonight Jake and I decided that we could use a little family time. We determined we'd go to Dairy Queen by Walmart and get some ice cream through the drive through and then come home and watch "Close Encounters of the Third Kind". Elisabeth thought that was a great idea and was extremely excited to go get her own ice cream. She had just gone potty and hadn't put her pants back on yet. We gently reminded her that she needed to get dressed so we could go. She ran back in her room and got new pants on that I had just folded and put away. This is how she came back:

Could it look any worse? Stripes and plaids are a for sure no go! What could we say though to change her mind? Elisabeth thought she looked great and was very proud of her attire. I had to shake my head at my strong willed child. Since we were only going through the drive up window to get the ice cream, Jake & I decided it wasn't worth the fight to make her change. I hope that when she becomes a teenager that her wardrobe choices will be a little better. And in conjunction with a few posts prior, that she'll actually understand how to put makeup on properly! If TLC did a child's version of "What Not To Wear" she'd be a shoo in.

A little note on Nathan: His feedings are going somewhat better than a couple of days ago. He is still trying to dry-heave but at least the constant wailing has cut down somewhat. I feel like we make progress and then we have to take a few steps back. He did, however, take a little formula from a medicine cup this afternoon for me. I let him play with the cup for a couple of minutes without any food in it. Then I put 10 cc's (1/3 an ounce) in the cup and held it to his lips. At first he was taken back by it, but the second time I tried he was a little more ready to swallow. I got the 10 cc's down him but by the end of it he wasn't sure he wanted more so I didn't force the issue. I'm thinking I'm going to try the bananas again tomorrow and see how he does with it mixed with the formula and through the medicine cup. Tonight I let him have a small taste of ice cream. He liked it on his lips, but he wanted to be in control of whether it came to his mouth or not. I'm hopeful that someday Nathan will like food and we can ditch the button! Only time will tell!



A new day and a new problem....

Actually this problem with Nathan isn't new... its the result of spending 9 weeks in the NICU flat on his back with the nurses uncomfortable to turn him properly because of his distractors. So now Nathan has been diagnosed with positional plagiocephaly meaning literally.... FALSE HEAD. Poor child has such a flat head that when he had it scanned today the measurement was off by 30 on the flat side of his head compared to the place that is shapen normally on the back side. In a week and a half or so, Nathan will be the proud new owner of a STARband cranial remolding orthosis. Proud, I'm not sure, but at least it will help fix that problem. He should only have it on for about 3-4 months at the most.

More pictures to come when he actually gets it!

Thursday, June 19, 2008

Roll Over.....

It is 2 weeks ago today that Nathan had his open heart surgery for his correction of Tetralogy of Fallot. What an interesting 2 weeks to say the least! After only six days in the hospital, Nathan was released from Primary Children's. When we brought him home is when his troubles actually began. He came home on Lortab, Lasix, Aldactone, Prevacid, Tylenol, Motrin, and now Reglan. Nathan was doing great from healing from the surgery as long as his pain medicines were given in a timely fashion. On Friday we realized that he wasn't having regular bowel movements and that he needed a laxative and suppository. Poor kid! He absolutely hated both! We thought we had that under control when he started trying to vomit. Jake and I would feed him about an ounce or so through his g-tube and then he would start wretching. Since Nathan is physically unable to throw up because of his nissen, it was very sad to see him dry-heaving and then screaming at the top of his lungs in pain. It got so bad that he was only taking an ounce or two during the day. We'd give him his continous feeds at night through the pump but he would still wake up every couple of hours or so dry-heaving and crying. It was so miserable for both him and us!

Monday morning I'd had it and began worrying that since the Lasix is making Nathan drain off the excess fluid on his body that only get 1/2 of his daily fluid intake would lead to dehydration. I called the Cardiac Nurse Practitioner and explained the problem. She said to go see my pediatrician and to call her back the next day. I made an after hours appointment with Dr. Valdez in the Spanish Fork Clinic. He told me that he thought Nathan should be back on TPN so that he wouldn't get dehydrated which meant being put back in the hospital. Dr. Valdez told me to call the Cardiologist and tell him what he had said. I said I would so I called the Cardiac Nurse Practitioner again in the morning. She then transferred me to a dietician who said that we should put him on continuous feedings 20 - 24 hours a day with a higher caloric content! That didn't satisfy me so Jake called the GI surgeon's nurse practitioner to see what she thought. She said they would really just worry if Nathan didn't look well perfused. She did say if we thought it was serious to go to the emergency room. I got mad and decided that since Nathan already had a nissen that he must need to be seen by a GI doctor to figure out what is causing his tummy problems. I called the GI clinic only to be told that I needed a referral from Dr. Downey (the surgeon who placed the g-tube and nissen) or the pediatrician. I was so upset at the point! I had a baby who was wailing and I couldn't get any help. At 5:00 yesterday evening, the Cardiac Nurse Practitioner called to "check in" on Nathan. I told her what had happened and she said to get an appointment with my pediatrician and get a referral for a GI specialist. She was about as much help as a stone wall! Jake and I saw Dr. Bennett on Wednesday and we did get a referral for the specialist. We have had a little better luck with Nathan tolerating his feedings. Dr. Bennett decided to let Nathan have 20 calorie formula to see if he would tolerate it better. I'm trying that tonight to see if that helps at all.

Nathan has too many specialists: Cardiologist, Cardio-Thorathic surgeon, ENT,GI Surgeon, Plastic Surgeon, a Dietician, and now hopefully a GI doctor. What I have found is that these people are so specialized that they won't hardly talk to each other! What has the medical community come to?

The bright spot in all of this is that Tuesday afternoon, June 16th, Nathan was lying flat on his back on the floor during one of his pump feedings. He got bored and decided Elisabeth was much more interesting than his fingers. He kicked himself up onto his side to look at her. Not bad for a kid with almost no real tummy muscles to speak of and just having major heart surgery a week and a half earlier! I'm hoping that this surgery is the beginning of many more major improvements for Nathan.

Wednesday, June 18, 2008

My Black-Eyed Beauty

Tonight, after I put Nathan down to bed, Elisabeth and I came into my room to read stories and work on the computer. I was surfing the Internet looking for possible daycare providers for Nathan and was engrossed in finding out information for how to place a help wanted ad in the Daily Universe for a nanny. Elisabeth must have noticed that I wasn't really paying attention to her and so she slipped into the bathroom. I thought she was going potty but she had other thoughts on her mind. She decided to have a field day with my mascara that I left on the counter this morning. Mascara has always been her favorite makeup with lipstick coming in at a close second. She proceeded to try and put it on. Obviously she got it everywhere except on her eyelashes where it actually belongs. I'm saving these pictures for proof when she's a teenager and learning how to put on makeup that she'll need a little help from someone else!

I could hardly be mad at her though. I didn't even notice what she had done because she quickly flushed the toilet and came and snuggled her back into me. She laid on my bed asleep for an hour before I picked her up and took her to her own room. That's when I had to grab the camera and take a few shots.

I'm grateful to be Ellie's mom. Even though she's a little headstrong and over-motherly to her brother, Elisabeth is more than I ever could have hoped for. I love the silly things she does and am discovering how fun it is to have a child who actually thinks for herself. I wish that Jake & I were in a situation where I could afford to stay home and spend more time with my kids. Until Jake gets a masters degree in administration, that really isn't a possibility yet. Plus, our million+ dollar baby needs the best health coverage he could get which is from the state. At any rate, I look forward to the evenings when we can do fun things together. I am grateful for my little family!

Saturday, June 14, 2008

Who Needs Pets When You Have Kids?

Quick funny story....

Yesterday Elisabeth was playing outside on the lawn with her ball and riding her bike around the driveway. All of a sudden she pulled down her shorts and took off her underwear and began fertilizing the grass. Now, Jake & I didn't actually see her do it, Jake just happened to notice that she was playing outside without her bottoms or underwear on. He yelled at her to get back inside and put her clothes on to which she quickly obeyed. I went over to her and asked why she had done that and explained that we should be modest. I asked her why she taken off her clothes outside. She replied, "Cus I had to go potty and couldn't make it to the potty fast enough. You said I can't have accidents in my underwear because the bike will go in timeout. So I didn't have an accident! I peed on the grass!" She was so proud of herself for not having an accident and obeying Mom & Dad. She had this big grin on her face and asked if she could go back and ride her bike.

Who says that 3 year olds don't have circular thinking?

Friday, June 13, 2008


Ok, so Jake & I aren't the brightest apples on the tree sometimes! One of the conditions of Nathan coming home is that he is required to be on a constant flow of oxygen. We had a huge tank that was brought in by Praxair when Nathan came home from the hospital to use occasionally if Nathan had a "tet" spell or his crying got out of control. We had only used it a hand full of times when Nathan was home for those 2 months. Jake and I realized that we needed to use the extension pack to be able to carry Nathan around the house. So, we tried to fill the extension pack from the main tank. We only ended up putting pressure without oxygen into the tank. It fell on its side and then it started this high screaming pitch coming from the bottom and sides of the tank. It sounded to us like it was going to blow up! Jake grabbed it like it was a bomb and frantically ran over to Brad Hamericks house in front of ours. Brad is the manager of Praxair in Lindon. Jake explained what we'd done and of course we hadn't filled the tank with the oxygen that we were actually supposed to! I blame this totally on the lack of sleep that we haven't gotten in the last week! Jake let all of the pressure out and the second time actually filled the portable container with the oxygen without any problems. For about 3 minutes there Jake and I swore that we were in trouble. Now we're thinking that maybe when we were babies we didn't get enough oxygen in our own brains!

Leave it to an Ellinger.....

Thursday, June 12, 2008

Pretty As a Princess

Ellie is such a little character! When I asked her to get dressed this morning she decided that it was the day to display her Cinderella attire. Janice gave her a large Cinderella doll for going potty in the toilet. She packs that doll around with her wherever she goes! Cinderella is her alltime favorite and she loves to tell everyone! I guess there are worse things that she could idolize!

My Science Experiment

Nathan came home from Primary Children's yesterday... it was actually a more relaxing day than when we brought him home from the NICU the first go around. We weren't really scared of him; we just wanted to make sure that his pain would be under control and that his medications and food were all given at the proper time to help him get better. Nathan is currently taking aldactone, prevacid, lasiks, lortab, Tylenol (when he isn't given lortab), and motrin. I apologize if I spelled any of those wrong. He is still in a considerable amount of pain and it gets worse when he starts coughing which is a side effect of the specific anesthesia he was given. Since Nathan is on a drug that is meant to make him urinate and get the excessive swelling down, his diapers are EXTREMELY wet every time.

So since I had a consistent output to test diaper wise; I decided to see which brand actually holds more in it. I have the Walmart brand, LUVS, and Huggies. The Walmart brand drenched the clothes and the sheets (the sheet was considerably damp after I picked Nathan up). LUVS did a little better except that the diaper was starting to fall apart when I took it off of Nathan. However, the sheets weren't as damp as the Walmart brand. Huggies did have a little of the wetness get onto Nathan's clothes, but nothing more. Now you have to understand that each of these diapers were only on Nathan about 2 hours at a time and that the drug that is causing Nathan to do this has to get him to get rid of the 2 lbs of water he has retained in the last 7 days.

So my conclusion for the experiment is that Huggies is the best brand to hold little boys output. That being said, I used the Walmart brand on Ellie until she was about 5-6 months old. Then I realized that I could buy in bulk at Sam's Club and have only bought Huggies for her until she was potty trained. I'm glad that its Jake teaching science instead of me. He probably would have tested everything a little bit better....oh well. I'm wondering what everyone else's experiences have been.

Tuesday, June 10, 2008

Pictures of Nathan in the Children's Surgical Unit

Nathan's Open Heart Surgery Part 3

What a day of events yesterday! On Sunday Nathan was moved from the PICU to the Children's Surgical Unit. Being on this floor has its ups and downs. First of all, it has been extremely strange and frightening to Jake and myself that on this floor a nurse has 2-3 patients instead of a max of 2. The nurse here comes in the individual child's room and checks in on the child when the monitors are beeping; she doesn't stay by the child's bedside to monitor the child's condition. We have been so used to having a nurse within a couple of feet of Nathan as was in the NICU and the PICU so we have taken turns sleeping over in Nathan's room to watch him ourselves. It has made for a couple of long nights for both Jake & I. The ups are that it is the land of the everlasting slushy! We had Elisabeth come up and see Nathan on Sunday. At first she was very scared but after I talked to her about all of the wires she leaned over to Nathan, kissed him, and told him to get feeling better "bug". She has been so good in his room because of the tv, dvd & vcr player, play station 2, and all of the room to color and move around. The slushies have helped tremendously too!

I am so glad though that we have made the effort to stay by Nathan. When I came yesterday to relieve Jake from his post he told me the occupational therapist had only come in momentarily to talk about ways to help Nathan eat. She actually hadn't touched him though. Jake said that she had only talked to him for about 10 minutes max. To top it off the cardiologists team came by and told Jake that Nathan looked great and they were going to discharge him tomorrow. I was so angry; in my eyes Nathan didn't look good enough to come home and who on earth was this occupation therapist that wasn't doing her job? In retrospect for yesterday I actually feel a teensy weensy guilty about the way I treated the RN over Nathan. I demanded to speak with the cardiothoracic team's nurse practitioner, the occupational therapist and the plastic surgeon (regarding Nathan's poorly shaped head). She said that she could handle most of my questions since she had been there for rounds that morning. I told her that although I appreciated her report that I was specifically requesting to speak to those individuals again. I learned from the NICU that when a parent makes a request to speak directly with the doctor that those requests have to be honored. I could tell she wasn't happy with me because I had just added more things to do on her workload.

Within the hour the occupational therapist came and talked to me again about what she had told Jake. I told her that was fine, but I'd actually prefer watching her hold Nathan with a bottle and using some of the other techniques. She didn't say it in so many words but basically she told me that Nathan wasn't going to eat for her and that she wasn't going to waste her time. I then told her that she was the occupational therapist and that it shouldn't be that hard for her to come back and actually do her job. She gave me the look of all looks and was stuck because the nurse had just walked in on us arguing. She didn't come to work with Nathan until 4:40 p.m. because Nathan had been taken downstairs for a complete echo cardiogram. Nathan had missed his feeding and he was one angry child! I soothed him the best I could but he didn't want anything to do with the bottle; he just wanted to be fed. The good thing though is that the occupational therapist actually loosened up a bit and asked if Nathan had been seen by a craniofacial clinic. "A cranio-what?" I asked. Apparently there is a clinic for kids to be seen who need cleft repairs and have jaw issues like Nathan. I was elated to find out about this! She also asked who was repairing Nathan's clefts and I told her we had planned on the Dr. Marshall Smith, ENT. She suggested that before we go that direction that I speak with a plastic surgeon. That particular occupation therapist still wasn't my favorite individual but at least I had gotten some helpful information out of her.

I never saw the cardiothoracic nurse practitioner; I did however have Dr. Siddiqi, a pediatric plastic surgeon, come into Nathan's room and evaluate his head. I explained Nathan's large soft spot and that he had spent half of his life lying in a hospital bed. I told him of our struggle to keep Nathan turned off of his flat side and the instructions we had given the nurses when we came back for this hospital visit regarding his head. I then told him our insurance year starts over on July 1st and that we would need to begin paying on the catastrophe cap again. It would save us a large amount of money to get Nathan a helmet now instead of later. Dr. Siddiqi agreed and is going to write a prescription for a helmet. The other great thing is that I was able to talk to him about Nathan's cleft and how the repair would work. That was the most beneficial part of our conversation. It turns out that the plastic surgeons are able to have the cleft temporarily repaired at age 2-3 months. They sucher the soft palate together and then put in a retainer-like device to cover the hard palate. This stays in place until Nathan is close to a year old. At that point the repair would be done completely. I was so excited to hear that news. The ENT didn't want to begin the repairs until Nathan was 12 months old and then around 2-4 years old to make the final repair. This could be a major milestone in helping Nathan get rid of the button sooner! Because I had asked so many questions and spoke my 2 cents about how I felt about Nathan, it looks like his earliest discharge would be tomorrow (June 11th). I feel better about things now instead of how mad I was yesterday morning. It just goes to show that you have to speak up to get what you want.

Sunday, June 8, 2008

Remembering Mom

This morning (Sunday June 8th), I realized that one year ago today my family was gathered at the hospice in Salt Lake City around Mom watching her struggle for her life. She was in an incredible amount of pain from the numerous large open wounds as a result from her disease, calciphlyaxis. She was taking shallow breaths and was totally unconscious. I remember sitting in staff meeting at work that morning and getting the call from Janice that the doctors didn't expect Mom to live more than a couple of hours and to come quickly. I called Jake as he was dropping off Elisabeth to go to daycare and getting ready to go to school that he needed to go straight up to see Mom. I remember watching Mom that day wondering why she was facing the trials that she had to. Two days before I had gone to visit her at Pioneer Valley Hospital. One of the last things that she said to me in our private conversation was that she wanted me to keep the commandments and to be strong in the church. She emphasized that over and over. It was difficult to watch someone who knew that she was dying. Mom wanted to be there when Janice had her baby. I had told her only a couple of weeks earlier that I was pregnant with Nathan and she grieved she would not be a part of these two little boy's lives. Jake & I both joked with her that if she met our baby not to tell him too much about his parents for fear he wouldn't want to come to us. Mom has since become that angel to my son throughout all of his struggles. I know she was there to comfort him when he was in the NICU going through his jaw surgery and his incredible amount of pain in the days and nights there I couldn't be there with him. She has also been here with Nathan as he has faced this surgery. Watching Mom die has increased my testimony. Moments before she passed away she awoke and looked all of her children in the face trying to say goodbye. Then she looked up at the ceiling and acknowledged with her eyes that there were people there. That's how I know that Mom has been here watching over us.

I would have laughed at someone if they had told me a little over a year ago that at age 26 I'd lose my mother and that the weekend of her death a year later I would be at Primary Children's watching over Nathan after he had his open heart surgery. It has been a difficult couple of years, but I also realized this morning that I wouldn't trade these experiences for anything. We met other parents of children with heart problems yesterday at a picnic. There were many children there who have struggled so much more than Nathan. It makes me grateful that Nathan only has Tetrology of Fallot and not anything worse. Going through this has made me appreciate our blessings no matter how large or small they might be. It has also made me realize how important relationships are. We couldn't have made it through these past 4 1/2 months without the help of our family and friends.

Here are some pictures of Mom.

Friday, June 6, 2008

Additional pictures of Nathan on June 6, 2008

He is such a brave little guy! I could tell he was feeling a little better when he started wanting to suck on his thumb again. He was only awake for about a total of 20 minutes today. I can't blame him; if I'd have had open heart surgery the day before I would have wanted to be asleep all day too!

Nathan's Open Heart Surgery Part 2

Nathan post operation at 2:00 p.m. He came back very stable and with good vital signs.

Nathan has never liked having a breathing tube! Today was no exception. The nurses put sock on his hands and then pinned the socks to a blanket so he wouldn't be grabbing to take out the tube.

Jake and I feel very blessed that Nathan's surgery had a good outcome. Dr. Hawkins was able to patch Nathan's ventricular septal defect without any complications. However, when he began to work on Nathan's pulmonary valve, the valve only measured at 5 -6 mm instead of the 8 mm that the echo cardiogram has shown. Due to this, Dr. Hawkins had to cut into the valve to open it up and allow for adequate blood flow. We were told by Dr. Hawkins that Nathan will now need the pulmonary valve replaced sometime in his life. He was hoping that Nathan would make it to be a teenager before this had to be done so that his heart could grow into almost an adult size and that the replacement would be permanent. Jake was given the patch as a "souvenir" of the day. We were able to see how large the patch was that was used in Nathan's heart. I'm so grateful that everything went so well.

Nathan was taken to the PICU and placed in bed 9. The surgeon, PICU Attending, Cardiologist, Cardiologist Fellow, Resident, Nurse Practitioner, and Anesthesiologist all explained to Jake and I that they were going to be very cautious about taken Nathan off of the ventilator. We explained to all of them that Nathan had been on a breathing machine several times before and that because of his narrowed airway we were in no hurry to have him taken off of the machine. We requested that he not be taken off of the ventilator until the next day so that he wouldn't struggle so much. All of these people kept apologizing about the fact that they were uncomfortable about taking him off of the machine a couple of hours after surgery as was normal protocol. The nurse, Heather Pederson, kept laughing that we had the same conversation with 6 different people who kept apologizing to us over and over when in fact they were doing exactly what we wanted them to!

I made a very interesting connection with Heather, Nathan's first nurse. We were casually talking about babysitting and daycare when she asked what my job was. I told her I was a tax auditor for the state. She told me that her mother in law had recently been audited and asked if I knew who the auditor might have been. I had to laugh; I had completed the audit last summer. I knew her mother in law very well and we swapped stories about our encounters with her. She took such good care of Nathan. He couldn't have been in better hands.

Jake and I were so tired that we got a room at the University Guest House and left a 7:00 p.m. during the nursing change to check into our room. I had thought about going back later to check on Nathan. I was so tired that I fell asleep on the bed at 7:30 and didn't wake up until almost 7:30 the next morning. It was the best thing I could have done. When we got to the hospital this morning we were very alert and asking for specific doctors, dietitians, and occupational therapists to come and evaluate Nathan. We were excited that Dr. Downey, the surgeon who placed Nathan's button, came down himself to say hi and to check on his "little buddy". The dietitian gave us goals that Nathan needed for feeding and getting him off of pump feedings at night. She was SO HELPFUL! Everything was written down and a pamphlet was given to us about when and how to introduce new foods to him. The OT/PT also came and talked to us about Nathan's oral aversion. She asked for his history of attempts at feeding him. I told her EVERYTHING which took about 20 minutes or so. When I was finished I asked what she thought and what she might be able to add. "There's not much I have to add", she said. She wrote down some information and said that she'd come on Monday to work with him. After she left Jake said to me, "If you'd gone on a couple of more minutes I think she would have offered you a job!"

Nathan woke up for a couple of minutes this afternoon. He wanted more than anything to suck on his thumb. I took his fingers out of his sock and let him suck to his hearts content. He also held onto our hands and coo for a couple of minutes. Nathan started having the hiccups and his face suddenly dropped. It was easy to tell he was in a great deal of pain and so the nurse gave him another dose of morphine. He quickly drifted off to sleep. We covered his little body with a warm blanket and then left for the afternoon. It is difficult to be torn between your children. Elisabeth wanted us to come and get her which was understandable since we hadn't seen her in two days. We left the PICU at about 3:15 p.m. and headed home to pick up Elisabeth from Kathleen, Jake's sister.

During all of this Nathan has been having adequate blood draining from the site. He is quite swollen and the lasik hasn't kick in as well as the doctors would like. He was given a different drug this morning to help him pee off the extra fluid he is retaining in his body. His vital signs are excellent and he had no problem coming off of the ventilator this morning.

We are so appreciative of every one's thoughts and prayers in Nathan's behalf. We know his name was submitted in several temples and that many people fasted for him this past Sunday. Jake and I have felt very peaceful these last couple of days. Elisabeth, even at the young age of 3, has felt this peace. After Jake and his dad gave Nathan a priesthood blessing on Wednesday evening Jake's mom became a little emotional. Elisabeth commented, "Don't worry. Nathan is going to be just fine." She has shown such simple faith and has become such a source of strength to Jake and myself.

I am so grateful for our set of problems instead of some of the other children's I have seen in the PICU. It is a very humbling experience to see your child in such a state. I cannot imagine how our Heavenly Father felt watching Christ suffer in every one's behalf. I have come to understand that we all need to be more compassionate to one another to help ease each other's burdens. That is what Nathan's birth has taught me.