Weekend in Iowa

I had such a great weekend. I grabbed my fun skydiver friend Ellen and we headed down to Okoboji, IA, on Friday afternoon. We met up with my college friends at my aunt and uncle's beautiful lake home, since they were out of town visiting my dad and stepmom in North Carolina. The weather wasn't ideal, but we thoroughly enjoyed our time together. I LOVE THOSE GIRLS. We had a wonderful time catching up and being silly. I missed Elijah terribly, especially after having a difficult week last week, but I made up for it by smooching him like crazy today when I got home. He didn't know what to think of all the Mama kisses.


My wonderful college friends, minus MISSY!


The Cute Ellen!!

Are you missing this cute face?

Not much to report here, I just wanted to post a few pics. I'm feeling much better finally and I'm ready for a fun weekend with my friends (but I'm seriously going to miss my chubby baby). Elijah is as feisty as ever this week. It has been a bit hard because he hasn't been napping well at daycare, so by the time we get home I basically feed him and put him to bed. :( That's not enough Elijah Time for me.

Growing man

I felt pretty yucky for most of the weekend, so I headed back to the hospital on Sunday. My xray showed no indication of an obstruction being present, so that was good news. Now if only I could start feeling a little bit better. They didn't see a need to keep me there, thankfully, so I'm back at work today. This coming weekend I'm planning on meeting my favorite girls in the world in Okoboji for some much-needed girl time (thanks Julie and Virg for letting us stay at your beautiful house on the lake!), so I'm praying that I feel 100% by then.

Within the past week or two, Elijah has gotten really feisty and assertive. I think he's letting us know who he is as a person and trying to communicate more. We have heard high-pitched screams that we've never heard before and he is not shy about letting us know if he is unhappy about something. Dan and I often find ourselves looking at each other like, What is he doing? What happened to our sweet baby? Although sometimes frustrating, it is fun to see him grow into his own unique little person.

We're still working with him on signing and talking, but he hasn't made a whole lot of progress. He knows the signs for ALL DONE and MILK like a champ, but that's about it. When I ask him to say "Daddy," he usually says, "Ba. Ba." He sometimes says "Mama" correctly. A lot of the time, both words come out as "Mamba" or "Bamba." It's cute because he always looks so proud of himself.

We are making great strides in gross motor development, though! He is still crying his head off when we make him get to a toy on his own, but he will usually scooch over to it through the tears.

In the past week, he has started pointing his finger at things he wants, giggling at the puppies he sees in the neighborhood, chugging his juice/water from his sippy cup (finally!), taking 2-hour naps (finally!) and throwing the food that he doesn't like onto the floor. Every week brings new, fun things. I love it!

Beautiful face

Our good friend Ronda took these awesome photos of Elijah last weekend while we were at their house.








He cried HARD when Andrew and Dan tried to drive this remote control car around for a bit. I've never seen him become so attached to an object.

Almost forgot to mention that Elijah is 16 months old today! And it's the first day of summer!


p.s. Tummy is NOT feeling better. It basically feels the same whether I eat or not, so I've been eating a few more solid things to avoid complete starvation. If it isn't better by Monday, I have a feeling I'll be headed back to the hospital for more starvation and IV fluids. :(

Anorexia wouldn't suit me well

I'm so hungry! Ice chips, jello and chicken broth are getting old. When I fed Elijah dinner tonight I took a few bites of what he was eating and my stomach felt really full just after those few bites. I want to go to Big Bowl and pig out on my favorite dish:

red hot pepper chicken noodles
chinese egg noodles, chicken, fresh chili peppers, chopped peanuts, red onions, hot sauce

The doctor told me that if this is all a result from my c-section, that my stomach should start gradually feeling better. If it's not, it won't get better and that will be an indication that there is something more serious going on. So I'm praying it will go away quickly. We have enough health concerns to worry about with our little boy. Plus, I LOVE FOOD AND I MISS IT!

Here is a video I took tonight of Elijah. He was extra tired (so extra whiny, too) and as usual, upset that he couldn't reach his beloved trucks and that Mommy wasn't helping him. Have I mentioned how much he loves trucks? They are good motivation for learning to move. So far, they are the only things that have given him purpose to get places.



Dan is at the dropzone right now trying to finish up his coach rating, which is a step closer to becoming a tandem instructor. He has the most thorough person teaching the (3-day) class (MILES), so he is learning a lot. Elijah is sleeping and I am going to sit outside and read a book because it is beautiful out! I might even try to eat a salad and see how that goes.

UPDATE: Dan called and he PASSED THE COACH COURSE! He didn't have to re-do any jumps (which is seriously a miracle with Miles teaching), so I'm very proud of him!!

Wednesday

I'm back at work, which is fine with me because it means I'm not in the hospital. I'm still not feeling 100% and can't eat very much, but I'm hoping that will get better with time.

I couldn't care less about the Celtics, but GO KG!! He deserves that win sooo much. And he couldn't have picked a better person, I mean team, to beat. HA KOBE!

Out of prison!

I begged the doctors to let me come home tonight and they agreed, as long as I promised to come into the clinic in the morning for a check-up. YAAAYYyyyy! I sped over to Carrie's house, picked up the tired man and hurried home to tickle him and kiss his juicy neck about a thousand times. He went to bed really early tonight because of napping issues. Oh well, at least I got a bit of home time with him.

I had a bowl of chicken noodle soup for dinner and my tummy didn't like that very much. ARRRgg! I guess I'll just see how the night goes and what the doctor says in the morning. If I have to go back to the hospital I will cry.

Good night everyone! Hope you all are having a good week. xoxoxo

I miss my baby!

Just hanging out at the wonderful hospital right now.. I was upgraded to jello and apple juice this morning and my stomach tolerated it ok. For lunch I'll get to try some soup and see how that goes. I am starving! I am daydreaming about all the delicious food I wish I could eat right now.

Dan is in Wisconsin today and Elijah's at Carrie's so I'm bored. I've been pushing my IV pole through the halls to get out of my room. I'm hoping I can get home later today. Hopefully the soup goes down smoothly.

Elijah, watch out! Mommy is going to attack you (in a good way) when she sees you!

So much for bonding time

You're not going to believe this, but I'm writing this from the hospital right now. And it's not Elijah who is here. It's ME! Ug, so dumb! At 1:30 in the morning I started having horrible stomach pains that lasted until 6:30 when I finally went to the ER to get some drugs. They ran a few tests and the CT scan showed that I have an "obstruction" in my intestines (I know, gross!). I was doped up when the ER doc explained things to me, so all I really heard was "surgery" to remove an "object." For the next five hours I thought I was heading into surgery today to remove a giant tumor. My imagination took me to horrible places.

Finally the doctor stopped by to explain that this obstruction is probably just a kink that is a late result of my c-section. I have to let my insides rest (not eat or drink anything besides ice chips and small amounts of water) for a few days. In most cases, these obstructions clear on their own. If it doesn't clear on its own, surgery will be needed. (I'm not considering that to be an option.) Originally they told me I had to spend the next 2-5 days here. Yuck! The on-call doctor stopped by a few minutes ago and he saw how good I was feeling so he said that if I continue to progress, he may think about letting me come home already tomorrow!

Dan brought Elijah by tonight and I was so sad that they had to leave without me. Elijah looked confused as the nurse checked my vitals instead of his. He kept a very close eye on everyone in the room.

Nurse is here, gotta go..

I want a cheeseburger!

Another fun weekend

Toast, one of the items on the tolerated food list.


If you ever want Elijah to smile, laugh, roll over, be happy....give him a truck! He loves trucks more than all the millions of other toys he has ever played with combined. Look at that happy face.


Last night we spent the night at our good friends Ronda and Andrew's house. Their place is always fun because they have such fun toys and because they are such fun company. And it's nice that Elijah sleeps like a champ in their cool, cozy basement. Andrew showed Elijah this remote control car and he was in HEAVEN! When Andrew and Dan tried to drive it around, Elijah cried his eyes out for the entire time it was away from him. When it came back, the tears instantly stopped.


I see the camera, Mama, and yes, I'm so big! Check out this fun car!


Andrew and Dan practicing their chipping. It was such a beautiful night! It was one of those top ten Minnesota days that we all tolerate this state for.


Ant's eye view

It was a beautiful weekend and we enjoyed every minute of it. As always, it was fun hanging out with our awesome friends, and we had a nice lunch with Dan's family today to celebrate Father's Day. Elijah took a TWO HOUR AND FORTY-FIVE MINUTE NAP at Grandma's house today. What??!? That is a record! And yesterday he took a 2.5-hour nap! This is so unusual that I've been worried that he might be getting sick, but he hasn't had a temp and nothing else out of the ordinary has been happening. Maybe he's going through a growth spurt of some sort? Let's hope the good napping continues and that nothing else is amiss.

Dan will be in Wisconsin tomorrow through possibly Wednesday getting his coach's rating so he can get his tandem rating. Elijah and I will have some alone time and I always love that. I love that boy. He's awesome.

I hope you all had a nice weekend. Happy Father's Day to all the dads, especially my own dad and my husband. You are both the best fathers in the world. I LOVE YOU BOTH so much.

p.s. If the Lakers win tonight I might cry. Does ANYONE like Kobe? I'm rooting so hard for our beloved KG!

Fathers know the important things

Last weekend I was squished in my seat in the Otter, waiting to get to 13,000 feet so I could jump out of the icky hot airplane. The only way to keep mildly comfortable when sitting in a packed Otter is to turn your body slightly "downhill" and put your arm around the person next to you. I had my arm around the guy next to me, who I had seen around the dropzone off and on for the past few years, but who I knew nothing about. I didn't even know his name. I started thinking about that and realized how ridiculous it was. I had my sweaty arm wrapped around this guy, I was breathing in his ear, snugly squished in next to him like a sardine, and I had probably been in the same position with him a dozen other times. And I didn't know his name?!

A few years ago Dan and I lost a friend. I remember being at his memorial and seeing his friends and family celebrate the life that he had lived. I vividly remember having the thought, How sad that we waited till after he's gone to celebrate this wonderful person. He was one of the most generous, selfless, kind people all of us had ever known. I wish I had told him what I thought of him before he died. A few weeks after his death, I sent him an email, obviously knowing it would never be read, but I told him what a good friend he had been to Dan and me and that I appreciated his kindness and generosity and that I wished I would have said all of that much sooner.

Now that I'm a mother, things like this have much more meaning. These are the concepts I want to teach my son. I want him to accept and love everyone. I want him to take the opportunity to really know people and make them feel special. I want him to be able express himself comfortably with the people he loves. The only way to give him the chance to do these things is to set a good example for him.

MY father has been THE absolute best role model for everything I just mentioned. He would never sit on a plane next to someone and not know his name, what college he went to and what his favorite sports team was within 30 seconds (of course, you'd never find him on a plane period, especially a skydiving plane). He never passes up an opportunity to tell people how much he loves them or how proud he is of them or to give them a big, sincere hug. He genuinely wants to know everyone he meets and he instantly makes them feel loved. He is friendly, kind and considerate to every single person who crosses his path, with ZERO exceptions. As far as I'm concerned, these are the really important things in life. All that really matters is how you treat the people you share this world with.

Thanks for being such a good role model for my son and for me, DAD, and Happy (early) Father's Day! I love you! (Have a safe trip across the country this weekend!)

Elijah says:
jsssssssssss;a'''   '';'          kd;wqle

Strong-willed

Doing two of his favorite things...munching on his bottle and lying on his back, not moving a muscle

Elijah is getting much better about rolling and being on his belly. Finally! I try not to get caught up in worrying too much about it because I know crawling and walking will all happen in its own time. It is nice to see progress, though. It's slow, but we're definitely moving in the right direction. Do you have any idea how many cartwheels I'm going to do on the day Elijah crawls for the first time??!

I only got to spend a short little bit with the chubster tonight because he only took a 30-minute nap all day, which means that he was ready for bed at 5:30! AGghghhhh! Days like this are hard and make the work week that much more difficult for me. I need my solid two hours a night with him or I get grumpy and by Friday I'm missing him like mad. He did eat an awesome dinner for me before crashing, though! I made spaghetti and he kept gobbling it down and opening his mouth back up like a little fishy.

He seems to be getting confused with the sign language lately. He signs ALL DONE for just about everything. He will pause, look at his hands like, THAT'S NOT WHAT I MEANT, and then just look at me. We're working hard on it, so hopefully things will start to click soon.

Recently we have really noticed Elijah's very strong will. We have always known he's been strong-willed since he's been such a superstar at recovering from some major things, but now we have more proof. He already knows how to push buttons (refusing to eat, nap, roll and move when he knows we want him to) and we are going to have some serious challenges ahead. Bring it on! I love that we're dealing with these things. We could be dealing with much much worse. I'm so thankful that he is here with us. I appreciate every second, every challenge, every little thing. I love this kid.

Sweetness

Elijah has been showing some stubbornness when eating and napping lately, and he has been a bit extra crabby because of it, but overall we had a really good weekend. On Friday night our sweet friend Debra offered to come watch Elijah so Dan and I could get out of the house. We went and played pool, video games and darts. Don't ask Dan who beat who in Pac-Man (very badly). Saturday morning we went to the dropzone and Dan got quite a few jumps in. I only made one jump but it was awesome! My friend Julie and I jumped through 10,000+ feet of clouds and it was one of the prettiest jumps I've ever made. I was on cloud nine for the rest of the night! We came home this morning and have just been hanging out today. We've gone for a few wagon rides and we have even tried some new foods, which have not been accepted very well. We are really going to have to work on this eating thing. Like I have said before, no picky eaters in this house!


The camera comes out and suddenly Elijah is SO BIG!


Yep, again.

I just put Elijah to bed and..he is just the sweetest boy in the world. It's hard to explain what it is like to watch your baby sleep. He is so innocent and peaceful and I want to protect him from this crazy world. I think I'll build a bubble for him tomorrow.

I hope you all had a nice weekend! Thanks so much for checking in on our boy. He is doing GREAT and we are really enjoying dealing with "normal" baby things right now. August 20th is our next date with the hospital and that seems like a long ways off so that is a good feeling. I will take the picky eating any day!

Imbalanced

Our sweet Elijah is "all fixed" (for a few years at least) and it is the best feeling in the world. Over seven weeks have passed since surgery and our baby has more energy and spunk than ever before. It is wonderful, amazing, indescribable, relieving... Most of the time I still don't believe it's true.

I thought I'd be able to let out a big sigh after this was all finished and happily pick up where we left off. And I have let out a big sigh, a huge one, but....where did we leave off again? The last time my life was anywhere near normal was just after Dan and I got married over two years ago. That was before Elijah was in the picture, so we can't pick up from there. Ever since Elijah was as big as a pea things have been anything but normal and some sort of whirlwind has been circling through our lives. Now I'm finding that I have to figure out what this new normal(ish) post-surgery life is all about and I don't quite know how to do that.

I feel like I have just come back from the war and I'm trying to cope with the aftermath. I've been having a lot of dreams where Elijah's lips are blue or his sats are at 30% again or he is back in the hospital and the nurses are unable to wake him up. Obviously the time surrounding surgery has affected me deeply because the scary parts are still lingering. There was this weird breathing thing Elijah did right before surgery where, with every breath, I could hear six quivers. Three quivers on the inhale and three on the exhale. It wasn't fun to listen to because it was physical proof that he was struggling to breathe. Lately I keep imagining that I can hear those quivers again. They aren't really there, but I worry that they could be. Then I convince myself that maaaaybe I just heard one, so I listen closely and realize I'm delusional.

On a deeper level I am unable to get the bad things out of my mind and on a more conscious level, I can't seem to comprehend what it's like not to have stress, anxiety, fear and/or panic attacks as a part of my everyday life. I am constantly feeling these conflicting emotions and I feel so out of balance because of it all. I am hoping the next couple of months will bring some clarity and that the more time I can put between then and now, the better off we'll all be.

Pictures of the cutie pie (and an odometer)

Dan was proud of his car's achievement today. Little Red is a good car. She keeps on chugging along.


We're working on feeding ourselves..


Or turning the bowl upside down






Yes, so big, we know!!



Ok, does anyone have any food suggestions for a 15-month-old? Elijah isn't totally interested in adult food yet but he's fed up with baby food. It seems like all the kid eats is cottage cheese, cheese, yogurt, milk (uhh, yeah, I think we've got dairy covered), cheerios, some stage 3 baby food, and sometimes toast or cream cheese/turkey sandwiches. We need ideas! We tried feeding him salmon and asparagus tonight and he spit it all out and gave us the yucky face. Elijah has to grow up to be a good eater like his mommy! I've never been picky about anything, so I don't know what to think of this.

Progress!

Every day for the past week we have been working hard with Elijah on rolling. We have been making him either work to get a toy or at least allow us to help him work to get a toy. If he doesn't do one of these two things, he doesn't get the toy. Yesterday was the first time that he willingly rolled onto his belly by himself and he stayed there for a couple minutes as he played. And he didn't seem to mind! YAY! Progress! He can even sort of get his legs underneath him a little bit and scoot (only maybe an inch or so, but at least it's something!). His arms are really lacking in strength, so we will focus on getting those strong.

He has been napping so much better lately, too. He has been taking one 1.5-2.5 hour nap almost every day! For night sleeping, we are trying to transition him from sleeping from 6pm-6am to sleeping from 7pm-7am. Right now we're doing 6:30-6:30. I'd like to have a little more time with him in the evenings since I don't get home from work till 4:30, so hopefully this works out. He has just been so set on his 6pm-6am schedule for so long that it seems to be ingrained in him.

Not much else to report. Things are pretty low-key right now which I love. Tonight Dan is at a Twins game with his dad. I just put Elijah to bed and I'm going to go read for a bit and go to bed myself! Aaaaahhhh I love sleep.

Krista got me

Alright, I've never done this before because this blog's sole purpose has always been to inform people of Elijah's progress, etc., but since this is like the tenth time someone has asked me to do one of these, I am going to answer some ??s from Krista...so that means that all my heart mama friends have to answer these same questions!

What was I doing 10 years ago today?
I was one year out of college, probably sitting at my desk at Meridian Advertising in Omaha, feverishly working on a tight Super Kmart ad deadline, color-correcting a photo of a slab of raw steak or playing a practical joke on my coworker Ben.

Five things on my to-do list today?
1. Work with Elijah on his physical therapy
2. Meet Jess for movie date!
3. Employee handbook and organize/label PI sheets (work)
4. Send out graduation cards
5. Remove my horribly uncomfortable yet very cute shoes (done, phew!)

Five snacks I enjoy:
1. Candy. ALL candy! Especially the really sugary stuff (thanks, Dad, I got that from you, along with all of the dental work).
2. Edamame seasoned with salt and pepper (Mmmmmmm, haven't had that in a while)
3. Nachos with lots of meat and giant jalapeno slices
4. Fresh or dried fruit
5. Cottage cheese

Five things I'd do if I were a millionaire
1. Put a huge chunk of money toward Congenital Heart Disease research
2. Make lots of food for families stuck in the hospital with their children
3. Put aside $$ for Elijah's education
4. Buy a home that has a yard and no neighbors with yipping dogs
5. Travel a lot (including skydiving and skiing, with family being first priority, obviously)

5 places I've lived...
1. Manning, Iowa
2. Lake Havasu City, Arizona
3. Palm Springs, California
4. Scottsbluff, Nebraska
5. Joplin, Missouri

Excellent heart report from Dr. G

More kissy lips while waiting for the doctor

Elijah's cardiology appointment went great today! He was very well behaved during the echo (these take quite a while to do, so I was hoping he would handle it well) until the very end when the tech accidentally scratched his chin with the wand and made him upset. Other than that, he was very comfortable and happy. The echo results showed that his new valve is working perfectly and the ventricular pressures in his heart are perfect as well. After a VSD (hole) has been surgically closed, it is not uncommon for pressures in one of the ventricles to be too high because of the new way the heart is pumping blood. That's not a concern for him right now and everything appears to be working as good as can be expected. On top of that good report, he has no feeding issues, no breathing issues, no sleeping issues, no color issues and no need for medicine. Elijah is a superstar, as Dr. G calls him.



We will bring Elijah back in to see Dr. G in 3-4 months, and he will need another heart cath sometime around October to see if his crazy MAPCAs collaterals are behaving. Since he has Tetralogy of Fallot with Pulmonary Atresia (as opposed to Pulmonary Stenosis), things are always going to be a little bit more complicated because his arteries just aren't "normal." Pulmonary Atresia means that his pulmonary valve was totally absent at birth (Pulmonary Stenosis means that the valve is just narrowed). With no valve to deliver blood, his body created a bunch of new pathways so blood could get where it needed to be. These pathways (called collaterals/MAPCAs) act as arteries, but they are not true arteries, so they can be twisty and narrowed and they are typically much more complicated and fragile than normal arteries. Sometimes they are duplicated and a couple different collaterals can be sending blood to the same place, which isn't good. During a heart cath(eterization) Dr. G can see all of those collaterals and figure out what parts of the body are receiving too much, or not enough, blood from them. He can do most collateral management in the cath lab, which is good because that is all done through a catheter inserted into a vein in the groin. Sorry if I bored you, but that was a long way of saying that Elijah will most likely need many heart caths in his young life. This next one will be #5. When he is 18 months old he'll have had two open heart surgeries and five heart caths, amongst a few other little surgeries unrelated to his heart.


See? He makes this face constantly! I love it.

I asked Dr. G to give us an estimated guess about when the next open heart surgery will need to happen. He said that on average, TOF babies need valve replacements 4-5 years after their final repairs (some kids need them after 1, some after 9), but since the Pulmonary Atresia/MAPCAs complicates things, his best guess for Elijah would be 2-3 years from now. Dr. G is ALWAYS very conservative in his guesses, so I'm hoping this means we'll have at least three years before we have to do another OHS. Really, all we can do is wait and see and just enjoy every day we have with this awesome little boy.


Finally! A picture with Dr. Gremmels. If only I would have noticed that Elijah's eyes were half open. Oh well, at least he's smiling!


The paper on the exam tables is the most fascinating thing in the world

DZ weekend fun and a cardio appt tomorrow

Kiss me!

We had a good weekend at the dropzone and got lots of sunshine and fresh air. Elijah LOVES being at the dz and he sleeps very well out there. All of the stimulation is good for him. He took a two-hour nap both yesterday and today, and of course slept splendidly through the night as always. He hasn't taken naps like that in many many months! It was wonderful. Dan made eight skydives over the weekend and I made two. YAY I finally made some jumps! My first jump was with my sweet friend Ellen and my second one was with my hubby! It's so nice to be back in the sky. I'm hoping for a summer full of jumping (if money starts falling from the sky). We will be out there quite a bit because Dan is working toward getting his tandem rating. He's hoping to become a tandem instructor by the end of the summer.

I meant to get some pics from the dropzone, but I didn't. I will get some fun ones next weekend. I did get some cute pics after we got home tonight, so hopefully that will do for now. We see Dr. Gremmels tomorrow and Elijah will be getting a full echo (ultrasound of the heart), so we're hoping that goes well. He has been doing really well (minus the refusals to move AT ALL on his own, but that is a whole other story), so we expect a good report. We'll let you know what we find out. Thanks for checking in on us!


Aaaaaawww look at that sweet smile


Still making the cute kissy face