Pacing myself

I had an appointment with my cardiologist, this time he said if I had any fainting spells, dizzy spells, times when I was walking around my house and I felt tired, like I was dragging 100's of pounds that I should call them. That was also the appointment I mistakenly took Danger too.... The one where he cried the entire time, and freaked with at the doctors.... I'm glad I listened to the doctor though. I'm glad the doctor repeatedly got my attention, and made sure I listened.

Well, Monday after Mother's Day (what is it with Mother's Day!?!?!?) I got dizzy and I was feeling sluggish all day. So I called the Dr on Tuesday. They sent me a halter monitor on Wednesday, then had me come in for a cardiac MRI, that same Wednesday. The MRI was so they can "map" out my heart. So they could put the pace maker in the next Monday. Yup, that's right, I got a pace maker at the age of 26.

When Shark and I moved here, I went to the cardiologist, as a follow up from my heart surgery in Colorado. All my life, I have gone to pediatric cardiologists. The butterflies painted on the ceiling, stars on the tile floor telling you where to go, stickers at the appointment counter, puzzles in the waiting room. I was used to it, and it didn't bother me. Well, here in Utah, my pediatric cardiologist is also an adult cardiologist. I told him, before the surgery in Colorado, I didn't think anything would ever go wrong with my heart, ever again. I thought, One fix and I was done for life. Silly me. He told me the truth of it all. He said, By age 30, I would need a pacemaker, and by age 45-50, I would need a heart transplant. He didn't really sugar coat it at all. I am so grateful for that.

So I knew the pacemaker was coming. I just didn't expect it to happen all in one week! I knew I had about 4 years MAX left until I needed one. Every time I had gone to the cardiologist, he would look at my EKG and tell me if my heart action had decreased at all, even the tiniest bit. And every time I went, he would say, It looks just a tad bit slower than it did 6 months ago. But my heart is still strong. I mean, considering the weak side is doing the job that the stronger side is supposed to be doing... The doctors have said I have exceeded all expectations, most patients with my condition need the pacemaker by the time they're 20, at the end of their 2nd decade. I'm in my 3rd decade, and nearing my 4th!! The doctors are all a little surprised. It's just my sinus node, the one that tells the heard to beat, that is starting to slow down.

It's hard to think I'm going to be 26 with a pace maker. It's kinda scary, I mean, I'm just barely old enough to rent a car! I know there are patients younger than me who have pacemakers, but it's still kinda scary. I've had all kinds of thought running thru my head. I know it will give me longevity and hopefully more energy. But sometimes I wonder how I'll be right after the pacemaker is put in. Will I be able to pick up Danger? How will the stitches limit me? How long will I be out?

*****

Ok, I got it done on Monday. I have come to realize, I wake up from anesthesia like a beast. Apparently, I said my pain was a 9! Which I'm not entirely sure it was a 9..... Anyways, I didn't threaten too many people, so everyone was still friendly.

The Dr's tested my pace maker, and everything worked great. No disruptions, everything worked amazing. Well, I woke up and started to walk around a bit. Once I sat back down, my stomach started spasming, it was just like the bottom part of the hiccups. Well, it was like 10pm, the nurse called the on call doctor, who thought it could have been my body's response to pain or it could be my being blocked up. So they gave me morphine and miralax. The morphine apparently worked so they didn't pursue it much farther, until the morning.

As soon as my cardiologist walked in, I showed her my hiccups. She immediately said, Oh no! And she explained that my diaphragm was getting paced along with my heart. In normal anatomy, the leads go in right atrium and the right ventricle. In my backwards anatomy, my leads go in the left side. The phrenic nerve come down from the neck (C3-C5), the nerve splits and the left phrenic nerve passes over the pericardium of the left ventricle and then down to the diaphragm. (My nerves are in the correct location, it's my heart that is backwards... So the nerve goes around the back of the heart, where my leads are positioned....) So when the charge goes down the leads, it catches the phrenic nerve and my diaphragm is paced right along with my heart, which right now is set at 60 bpm. 

So 60 heart beats and 60 hiccups... It doesn't hurt, it's just really really annoying. And when I'm talking, I can't get enough breaths, well enough deep breaths. Plus, when I'm hiccuping, I don't want to eat anything cuz my stomach is getting tossed around and I don't want to hurl.... 

Anyways, the Dr's have tried programming my pace maker to lower voltage and all kinds of combos so my diaphragm doesn't pace with my heart. But the end result is they can't keep me at a lower voltage for an extended period of time, if my heart were to build up a resistance to the charge, the pace maker wouldn't do any good. So on Tuesday, the Dr's are going to replace the pace maker and reposition the leads so my diaphragm won't beat with my heart. 

So yeah... that's happening. I don't have a lot of pain, but I can't lift my left arm above my shoulder, and I can't lift more than 5 lbs with it. So basically, Danger and I have been just sitting around the house, watching TV, so you know, nothing out of the ordinary. :)

I've been doing good, it's just hard when things hurt. Also, this morning, when I sat up in bed, I swear I could feel the pace maker slide into place... It was soooooooo freaking weird. Danger has been good, he's been fussy, but he's been just fine walking every where, and he usually doesn't need to be picked up, so I'm grateful he's good with me not holding him. We've also been sleep training him in places other than his crib. So he had NO problem at all sleeping at grandma's and napping at Katie's. Which is awesome. We were kinds worried about it. Shark has been such an amazing help, he's been wonderful. :)

*****

Ok, so I went back in to get the leads repositioned. It was an awful week. Not so much physical pain wise, but mental pain wise it was awful. I feel like a broken person. I feel like part of me is missing, is not fixable. The open heart surgery 4 years ago was worse surgery wise, but mentally and emotionally, this one is worse. With the OH surgery, it was just me and Shark, and this one, there's Danger too. And all these stupid WHAT IF'S start popping up. With the 1st surgery, these thought sorta came up, but going BACK in makes these thoughts pop up more! It's awful.

Anyways, Shark has been parachuting. And in a way it's kinda worse for me. He's off jumping off cliffs and flying, and I feel like this broken person, never to be repaired... But at least it's a good distraction for him. He's had something else to fill his thoughts than everything going on with me.

When I went back in, I talked to the Dr's and they asked if I had any concerns, and I told them I react badly to anesthesia, with nausea and dizziness. The Dr's mixed up an awesome cocktail of pain relief and anti-nausea meds, and when I woke up the 2nd time, I was able to walk around right away and eat something, like RIGHT AWAY! It was awesome. I felt so good.

The difference from last week to this week is like night and day. I feel great. I really do. I have energy, I'm hungry, I'm not throwing up, I can chase my little man around! I feel freaking awesome!!! Seriously! The thing about it is, I don't really recall how I felt BEFORE the 1st surgery, but I think I feel so much better. I feel amazing!

I am so grateful that Shark and I had started to talk about getting as much information about the pace maker, before we knew we needed it. It helped prepare us for the totally random and shocking announcement - Hey, next week you're going for surgery.

I really do feel great. It has taken every one of us by surprise. 

Mom's Day

So yesterday was Mother's Day.

Shark and Danger made it a great day! They both got me flowers and Shark bought me pizza and Sprite and took me to our park. It was a great day!

Then we went over to Shark's parent's house where this happened :

 

 Yeah.

So I had a great Mother's Day and then I had a panic attack.

It all turned out alright in the end. Shark is safe and sound. :) And really happy.

I love being a mom and am so happy I have my little man. He is such a blessing and an amazing little person. He is such a wonderful spirit, such a curious little friend. I am so grateful for the opportunity to be a mom, for this job and role I've taken on. Some days are hard, but in the end, when my little man is smiling and laughing, I feel great. I enjoy wiggling my fingers at him as he runs away from me, smiling and giggling uncontrollably. I love him! And I am thankful for Shark, for the amazing man he is, the amazing man he'll raise my son to be.

I am thankful for my perspective on the mother I am, and want to be. I thankful that I don't always feel a need to be just like "that" mom. I am thankful for my husband, who understands who I am. I am so very blessed.

Here's my little man and what we've been up to in the past weeks.

Baby gifts and 10 on 10

I've been making some baby gifts lately. A lot of my friends are having babies. My gift of choice is : hooded towels, pacifier clips, and diaper baggies (small ones that smell like baby powder from the Dollar Tree!)

A friend of mine had a baby shower today and she's kinda in panic mode. You know, that panic you feel just before you have your baby - I'M GOING TO BE A MOM!! I'M NOT READY!!

I remember going thru that. I had a panic month before I delivered. (The nurse at the NST kinda started it off, she panicked cuz his heart rate was low ((duh, I was on a heart rate medication!!)) so she admitted me to emergency labor and delivery.... I freaked out! Shark was at school and NOT around and they said if little man's heart rate didn't accelerate they would have to deliver!!) Yeah, it sent me into complete panic mode.

But now, it feels like Danger has ALWAYS been around. Even tho he's totally a handful, watching him and taking care of him is like 2nd nature. I just know what to do.

Yeah, sometimes my patience is thin, but I just send Danger up to play in his room....

We've been going out to play lately. I bought a bubble machine from Wal-Mart for $6 (best purchase ever!) and I buy the bubble solution at the Dollar Tree. But Danger has recently started to RUN to the road. So we don't stay outside for very long.

Hey how about some pictures?

This is my 10 on 10, when in reality is a 10 on 11.... I completely forgot to do it yesterday! Ugh! Oh well. I got it done and it was awesome.

LOVE IT!

la tee dah

So, things have been kinda crazy around here.

Not like BAD crazy - but just kinda crazy.

Thursday, Danger had his 18 month check up. He is exactly the same as he was 3 months ago. He's 33 inches tall, and 24 lbs! He runs around a lot more but he eats more too!

Also on Thursday, I took Danger to the zoo. I went with a mom's group. It was lots of fun, but pretty long. We'll have to go again.

So Shark and I have been doing things around the house too.

We painted the wall in the kitchen. I've been wanting to do it for a while. But this wee we finally got around to doing it.

Also, we bought a screen door last winter. Shark painted it and put it on. I freaking LOVE it! It keeps Danger and Bandit in while letting the fresh cool air in too!! It's pretty awesome!

It's been fun!

sleep change

So Shark and I are celebrating our 5th anniversary this year.

Boo-yah!

We're kinda excited. But also, it doesn't feel like it's been 5 years. Ok, let's face it, some days it feels like it's been 10 but some days it feels like it's been only a few months. Some days I look at Shark and say, "Man, we're married!!" Or other days I say, "Man, we're parents!! Wow!"

Either way, sometimes it just catches me off guard.

Anyways, my mom set up a vacation for us. We're going to a resort here in Utah for a few days. At first, I had worked it out with my sister, she'd come watch Danger while we were gone. Well, she bailed. She's going to visit our parents in Wisconsin, and then she's got school to finish before she moves. Sheesh, you think you know someone... Totally kidding.

So then I asked my other sister, the one who's out here for college. And she can't take miss those classes...

So then I asked my in-laws. They said yes, I knew they would.

But the reason I wanted my family to watch him : because they would stay at my house and watch him. He would be able to sleep in his own bed, be around his stuff.

Well, now that the in-laws are watching him, they will stay at their own house.

However, we've learned from past experience that Danger doesn't sleep other places real well..... So with all the things that contribute to it : we need to get Danger comfortable with sleeping some place OTHER than his crib.

So I set up his pack'n'play upstairs in his room, and he's been sleeping up there for the past 2 days. This is day 3. He's been sleeping at night up there and napping up there. But one thing I've noticed : one only sleeps for 1 nap! This is such a shock for me, because he has always taken 2 naps, 10:30-2 then 4-7.

I knew it would happen eventually, when I tell people he takes 2 naps, they are always surprised. So I knew it was only a matter of time.

This is week 3 of him going to nursery. In our Church the little kids go to a nursery, from ages 18 month to 3 years, where they start to learn the very basics (about Christ, they sing songs, learn to share, plus it's a very good social experience.) Well, week 1 was great, he went in a played and was fine. Last week, he was constipated and it was AWFUL!! He was so ornery, and cranky. He cried the entire time. This week, Shark is working, so it was just me - but still, he just goes in there and plays! But he cried again! So we left. (it bums me out cuz I was so stinking cute today!)

It has been so hard! I have NO idea what his deal was today. the only thing I can of is TEETH. And if it's teeth, then it's eye teeth! Which I hear is a pain! So yeah, I'm not excited about that.

Well anyways - I'll share some of the cute pics of my little bear.

ooh - poptarts!

fry sauce

 Family squish

 brushing those crooked teeth

 I had a cardiology check up - I had to bring him. He was only there to play. I had The Incredibles on my Kindle, he threw it. As soon as they started to hook me up to the EKG and he freaked. He cried the entire time. My cardiologist is a pediatric cardiologist too! Danger CRIED!! I'm ok, everything is ok!

 he got style

 chilling on the car while dad put on his sweatshirt

 eating an ENTIRE marshmallow

 oh funny!

 skinned his elbow, didn't cry, showed mom, got it kissed then went on to walk across the street

such a stud in his BACON tie!! yeah it was a rough day today

It's not always sunshine and rainbows, but man o man, do I love him!

in love

So can I just say I FREAKING LOVE MY FAMILY?!!!!

Yesterday we went to the park. It was kinda chilly but we walked to the park that's 3 blocks away. We packed Danger up in the red wagon he got for Christmas and I packed some water, crackers and a blanket.

We brought Bandit (cuz let's face it, that dog needed to be run a while.) and a ball for him. We also brought some balls for Danger to play with but once we got there he didn't seem interested in those. He wanted to play with Bandit's ball. We bought a Chuck-it for Bandit for Christmas.

So after Bandit decided to not bring the ball back - Shark and Danger decided to go for a ride in the wagon.

Yeah we had a great time at the park. Although, like everything else, it wasn't without mishap. Danger and Shark were at the top of the hill, and Shark was tying his shoes, Danger stood up in the wagon to wave to me, then Shark grabbed the wagon handle.... Yeah Danger went down like a sack of flour. Right into a sticker patch. He was a tough little guy, he stood up, a little pouty, and held out his hand for his dad to take the stickers out of his hand. Then got right back into the wagon to go down the hill.

Man oh man! I LOVE my little family!

I am so truly blessed to have these boys in my life! To have them BE my life! I love every minute of it. These boys are so much fun, and make me smile.

As I was walking behind Shark and Danger in the wagon, my heart seriously swelled with pride and love for my boys. It makes me smile from ear to ear and makes me all warm inside to see them playing together. How on Earth do I find myself loving them more day after day?!

When I married Shark, I thought my capacity for love had maxed out. Then, I had Danger, and oh my heavens! My love for him exceeded all my expectations. I mean, I knew I would love him, but I never could have known HOW much. I'm so amazed at how much I love them!

I am so grateful for them. I love my life. Sometimes it's not pretty and sometimes it's not awesome. But most of the time, my life is pretty great! :)