Sunday, September 30, 2012

Camping with a baby

With Seth's birth, we didn't get to do any camping this summer. So after 12 nights in the woods last year, we were pretty s'more starved. We did our best to remedy the situation on Friday night. You can actually do some pretty good camping right at home.

Tinfoil dinners are easy in the oven and actually cook a little better, though nothing tastes better than slightly scorched potatoes under a pine tree. Afterward, you can roast mini-s'mores over a candle.

Finally, we set up a tent on the floor of the boys room. For some reason it was 10 degrees hotter in the tent than in the surrounding room. The boys kicked (sometimes accidentally) each other all night, and eventually made the transfer back to the bed about 4:15 am. At least no one used the "bushes" for a bathroom break.

Oh, and they cried when we put the tent away the next day . . .

Saturday, September 22, 2012

Fall Drive

Every year we drive Payson Canyon to look at the fall leaves. It is one of our favorite family activities. Randy and I started the tradition when we were engaged. We take a picnic, find some acorns, hike around, and take lots of pictures. So here are the pictures from this year. We went with Randy's sister and her family, so we were able to get a family picture. That doesn't happen too often.

We also tried a new "hike" to Devil's Kitchen, which is like a mini-Bryce Canyon. We usually don't make it this far on the Nebo Loop. Instead, we turn around long before, but everyone was in a good mood so we pressed on. It was more like a 3 minute walk to look at some really red rock formations. We had fun though.

We are already planning another trip. We went early this year so we think we could go again and still enjoy the leaves. If anyone wants to come, let us know!

Seth only made it part way up the Grotto Trail. He was eating for the first half of the hike.

I love this family picture. Mark is cheesing, Dax is talking, Randy is making his regular "Natalie is making me take too many pictures face," Seth is squirming, and I'm just glad everyone is looking at the camera.

We love seeing the colors of fall!

"Hiking" out to Devil's Kitchen

Devil's Kitchen

Saturday, September 15, 2012

Pictures of Seth's Insides!

Here are the pictures of Seth's coarctation. The top picture shows the recurrence of the narrowing. Look closely and you'll also see the measurements. The aorta before the branches is 7.49 mm wide. Down at the bottom of the aorta it measures 6.78 mm, which is normal after the branching. Up where the coarctation occurs, you can see that the aorta measures only 3.58 mm. In addition, the "color" of the aorta is important. The lighter it appears, the narrower it is. At the coarctation, it becomes almost invisible. 

You can see a couple of other things in these pictures. Three staples appear at the narrowing-- remnants of Seth's surgery. You can also see the tube they've inserted which has curled at the end into the aorta. The bottom picture doesn't show the measurements, but it's pretty clear that the narrowing in the aorta looks better.
Before the angioplasty

After the angioplasty

Seth is Home

Now that's our happy baby!

This morning we saw the doctor around 8:30. She said that everything looked great and it was time for Seth to head home. I asked about the blood pressure (the systolic is still 20 points higher than it was before admittance, but it's only 103), and she said it was well within the normal range.

Now we just watch for any infection around the insertion point. (The insertion point, where they inserted the balloon looks like a tiny snake bite-- two little holes and a bruise.) And of course, Seth has to go in for a check-up with his regular cardiologist in 30 days.

We also have the pictures of the coarc and a video to upload, but both are beyond my skill and must wait for Nat to wake up . . .

I finally woke up! Here is the video that Randy mentioned above. We are glad to be home and hope we can get back to normal life.

Friday, September 14, 2012

Seth's Recovery

Hey, this is Randy . . .

I just got home from the hospital. Not much was going on to be honest. Seth was groggy and whimpering when he was awake, but he slept most of the day. He was eating well, and his diaper output was good, too.

His blood pressure has remained high, but not dangerously high. Our nurse couldn't detect a pulse in his feet (this is critical as those of you who have been following along know), but the doctor found it. (I'm not sure our nurse could find her own pulse-- she's easily the least competent person we've had help us.)

So Seth would sleep, wake and whimper, eat, and sleep again. I kept telling him to stop being such a baby, but he never laughs at that, even though it's obviously hilarious. He did give us just enough smiles (2 to be exact) to let us know he still recognizes us and loves us. And though he appears to be in some pain, he didn't once complain that his aorta hurt-- brave boy!

We are happy to be through this part of the procedure, though I'm pretty sure Natalie is in for a long night!

Seth's Angioplasty

We just met with the doctor, and she said Seth's procedure went wonderfully. When they tested his gradient, they found a difference of about 30. (The gradient is a mathematical ratio that measures the pressure above and below the narrowing. Zero, of course, is a gradient with no narrowing.) Seth's initial gradient before surgery was 47. The doctor reported that the gradient is currently 5. She is very pleased with this number.

The doctor showed us photos and printed hard copies showing the coarctation before and after the angioplasty. We'll upload some images later, but it was interesting to see the balloons that they used to stretch the artery. First, they used a 6 mm balloon, then a 7 mm balloon. On the x-ray type images, it looks exactly like it sounds-- it's a tiny balloon.

Now we are waiting for Seth to wake up. His blood pressure was alarmingly high when we first saw him (174/100), but has dropped to a manageable 119/55. That's still high. They think he may be upset, though he's not showing any physical signs of discomfort. He is currently laying on Natalie's lap moaning as he tries to wake up. He was too "out" to feed yet, even though he is allowed to eat whenever he can.

Seth Goes to Surgery

Okay, technically "Seth Goes to Procedure" is more accurate. There are no actual blades or cutting with his angioplasty.

We just met with the doctor and anesthesiologist. The doctor was very informative and we learned some things about a coarctation that made a lot more sense. I'll discuss them below. We took a few pictures of Seth and sent him into the operating room. The procedure is supposed to take around 3 hours "from time he's in our arms 'til time he's in our arms." The anesthesia will be much lighter this time. He'll be recovered in 15 minutes rather than 15 hours.
Bye bye!

The doctor told us the reason for Seth's recurrence of his coarctation. (If you're not into detailed medical speak, you can stop reading here). When you're born, your aorta isn't being used. This is because it takes blood to your lungs, which aren't used in the womb. It also takes blood to your lower body, so while the aorta is shut off, you have a temporary valve called the pulmonary ductus artery (PDA) that bypasses the lungs and hooks on later. The PDA is made of elastic material which contracts in the first week of life as the aorta takes over. Coarctation is caused by (we were never told this before) some of that elastic material extending into the aorta. When it contracts, it contracts the aorta causing a narrowing (coarctation).

The surgery that Seth had a few months ago was set to remove that elastic material. The problem is, you can't tell the good stuff from the bad stuff. So the surgeon makes his best guess at what needs to be removed. Apparently, Seth still had some elastic material left in his aorta, so it continued to contract and re-narrowed the aorta. Obviously, it is less severe this time.

Now, we arrive at the angioplasty. They put a small balloon in his femoral artery near the groin, guide it up to the narrow spot, and expand it. The doctor used the word "cut" at this point-- "the balloon cuts into the narrowed material . . ." although I'm not sure how that works. Her explanation is that the wall of his artery is thicker and needs expanding. There is a very minor chance of breaking through the arterial wall, of course, and an even greater chance of having to do this again as Seth grows.

We were also told that if this procedure is unsuccessful, they'll repeat it. If it fails twice, it's back to surgery.

Of course, Seth took all this like a trooper. He was smiling, cooing, and oblivious as they took him into the operating room. We weren't quite so well . . .
Seth in his hospital outfit. Apparently, they think he's a 2 year-old and not a 2 month-old!

Thursday, September 13, 2012

Horrible Pre-Op

We're waiting . . . we love waiting.

I got a call this morning at 11:00 AM telling me that I had to bring Seth in for some blood work. I wish they would have prepared me for this because it threw a wrench in my whole day. I was going to vacuum, do some laundry, go to Costco (we are all out of food, especially fruit, around here), and get all ready for tomorrow. Well . . . none of that really happened, except the blood work.

I waited for Mark to get home from Kindergarten, fed him and Dax some lunch, nursed Seth, packed up and headed out the door around 1:30. Luckily my mom is in town and she came over to babysit. I don't know what I would do without her.

I only cried for about 2 minutes as I turned onto the road heading up to the hospital. It was like all the memories of the first surgery came rushing back and I realized that tomorrow I was going to send my little baby away. But I pulled myself together as I pulled into the parking lot.

Seth and I walked into Primary Children's hospital at 2:15. We got registered and headed to the lab. And then we waited and waited and waited. Finally, around 2:50, they called me to the desk to say they couldn't find any doctor's orders for blood work so they were going to call the doctor. Gee thanks, it took you 35 minutes to figure that out. Seth was starting to get fussy.

Finally at 3:10 we headed back into the room after a few phone calls and lots of questions for me . . . I still wonder if the right person is getting that blood work. Anyway, now the bad part begins. That stuff before was nothing.

Seth is a little chubby, as most of you know, so it was hard to find his veins. His veins are small and he has a lot of layers to go through before you can find them. For the next hour, he was poked, squeezed, and prodded. Four different nurses tried to find a vein where they could draw some blood. He was poked in both arms, both hands, and both feet. Seth also had his heel poked. It took two nurses, one to help hold and one to poke, a special light to help locate the vein, and a completely dark room (so the light would work) to get the blood needed, and a lot of screaming from Seth. I felt so bad. I would much rather have my blood drawn then go through that again.

I'm sure tomorrow won't be much better, but I'm hoping.

Oh, and the ride home was an hour and a half due to traffic and 2 stops to comfort our little baby pin cushion.
Poor little guy! :(

Dax's First Day of Preschool

I know you were all expecting a post about Seth and his angioplasty tomorrow (that will come later when I finally get the details), but I need to remember I have other children too. Not that I really forget, but I know we focus so much on Seth and the struggles we are having with him. But our two older boys are amazing. And Dax started preschool last week. He LOVES it! He looks so grown up walking into preschool and he never looks back. Dax has always been the most independent child in our family. He does things in his own way and on his own time. So here are some pictures of Dax, three years old, getting ready to go to school.

Cheeser face!

I told him we were taking a picture of his first day of going to school, and he kept walking around.
When I asked him to stand still, Dax said, but I'm going to preschool. So here he is--showing you how to "go to preschool."

Monday, September 10, 2012

Procedure Set

Such a cutie! Don't you think bad things should only happen to ugly people?
Seth will have the angioplasty on Friday. He will stay Friday night after the procedure, but not the night before. This time it feels so uncertain because they call you the day before to tell you the time and what to do. Last time, I at least felt like I knew what was going on after they scheduled things. That's okay. We have a few days to hang out and stress. They wanted to do it next Monday, but I was not going to wait a whole week. We'll let you know more details on Thursday when we know more details. Seth is doing wonderfully--even sleeping through the night this past week. It's hard to believe his little heart is working so hard.

Ready for church.

Thursday, September 6, 2012

Seth has a setback

Hey, this is Randy . . .

Well, Seth had his first post-op check-up since leaving the hospital 2 months ago. Unfortunately, the news was not good. It was his second trip to the doctor today, so I'll start with the first.

A few weeks ago, I noticed an irregularity on Seth's lower back. It looked like a tiny hole just below his waist band. I mentioned it to our pediatrician, and it turned out to be a sacral dimple. I'd never heard of this problem, but apparently it's not all that uncommon. It could mean anything from "no problem" to a distant cousin of spina bifida known as a tethered spinal cord in which the spinal cord is attached to the skin on the lower back. This is unrelated to coarctation.
Seth was great for his ultrasound even though he laid on his tummy for 20 minutes.
This morning Seth had an imaging done of the affected area and got the "all clear." His sacral dimple shouldn't affect his future in any way. Apparently people are walking around all over with this thing.

He even fell asleep after she wrapped him in a hospital towel. So comfy.
This afternoon at the coarctation check-up we got the bad news. The first thing they did was take Seth's blood pressure in his arms and legs. This is the easiest way to detect a narrow aorta. There is not supposed to be a difference of more than 10 in the systolic pressure. Seth's difference was around 35. That was a bad sign. The nurse brought the doctor in to double check everything. He noticed the same problem when he did the blood pressures without the machine and also heard a murmur. They continued with the echo to see what the problem was. Of course, the aorta has narrowed again for no known reason. The saddest part was Seth smiling and cooing at all the nurses, totally oblivious to the fact that our hearts were being broken all over again. We were totally unprepared for this news. He seems like a perfectly healthy child.

Seth has decided he likes to suck his thumb. It helped him relax during the echocardiogram.

The tech stepped aside so I could snap this picture of Seth sleeping during the echo.

Isn't he precious? He was amazing through all his tests.

So now, we go back to Primary Children's Hospital. He won't go through open heart surgery, but an angioplasty. This means they'll put a catheter through his arteries starting in his leg and use a balloon in an attempt to widen the aorta. He should only have to stay one night, but he will be completely under anesthesia. The coarctation isn't as severe this time, so Seth does not appear to be in any danger, and they hope this will solve the problem.

Still, we thought we were in the clear. It seems we're not finished yet.

So happy to be home!

Monday, September 3, 2012

Seth's Baby Blessing

Yesterday was Seth's baby blessing. He hit the two month mark this week and unfortunately he also hit 15 pounds. When I took him to the doctor, I was honestly embarrassed that he had gained so much weight. But my pediatrician was actually glad Seth was thriving so well after his rough start, and he made me feel much better.

Seth was a good baby through his blessing--he slept. And he was a trooper through the pictures even though he was hungry. But, Seth did decide to have a huge blow out later at church. I was burping him in the mother's lounge and heard him poop. Then I felt it running down his leg. I picked him up and it started to drip all over my skirt and the chair. So I laid him down on the burp cloth. I was kind of at a loss--I couldn't carry him out and drip yellow poop all over the church, and I couldn't leave him in the mother's lounge. Luckily, there was a sister in my ward who had just finished feeding her baby. She offered to get Randy and the diaper bag. Well, I'm not sure if Seth's white shirt will recover after the incident, so I am glad we got pictures before the poop explosion happened. Especially since the only thing I had for him to wear in the diaper bag was a brown onesie with a lion on it. It looked amazing with his black & red argyle socks! He smiled the whole time, so I didn't get too mad at him. I just wish baby diapers could keep more poop inside.

Dad and Seth

Seth with his dad & grandpas. 

The Ockey family!

Sunday, September 2, 2012

A Moment From My History

My sister is the author of this blog. It's a pretty popular blog with viewers from all over the world that tune in to see how she can possible raise 12 children. Well, as you can see from the post, I was recently "called-out" to share a moment from my past. Immediately, I had something come to mind. I'm pretty sure her day was so big that she has absolutely no recollection of my little role in it.

When Momof12 (she uses this as an Internet pseudonym) was in high school she joined a beauty contest in our small hometown. I only remember two things from the pageant as I'd have been only 8 or 9 at the time. Her memory of the event is recorded here. The first thing that I remember was that she didn't win. The second thing was that that horrible Sylvia Finlayson (whoever that was) did-- or maybe she placed, I don't know, but boy, did we blame her.

I remember being so sad that my sister hadn't won, that I did what any little brother would do. I made a fancy tiara from paper. I cut a band to go around her head, and pasted a diamond shaped paper to the front. I colored the band silver with an old crayon. The "jewel" was colored gold. (Yes, it was every bit as beautiful as it sounds.) I distinctly remember giving it to her and saying: "You can at least be my Princess."

Is that the sappiest, crappiest story you've every heard, or what? And I'll bet she doesn't remember a word of it!

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