The First Surgery

I finally got some sleep after what was probably the longest 24 hours of my life. When I woke up, I was in SLC. My wife was still at our local hospital. My son was in a glass box at another hospital. Not a great first morning for a brand new family.

And to top it all off, we realized we didn't have insurance yet. My wife's employer does provide health insurance, but we are both still young enough to stay under our parents' insurance so we didn't think to get insurance through her employer. Then we found out she was pregnant. After the deadline. We did great with putting it off until the very last minute. We had planned to get insurance the week before he was scheduled to be induced. Then he was born a week early. Oops.

So the first thing she had to do right after being discharged, instead of heading straight to SLC to see her boy, was to limp over to the insurance place and get our kid signed up so we could tackle the massive medical bills that were headed our way. We had already gotten a ton of grief from our local hospital for not having insurance.

In the meantime, I was heading over to the hospital with no form of identification. I had no idea where my wallet was. It was somewhere...in Utah. The security guard was nice enough to give me a hard time and almost refused to allow me to go upstairs to see my son. Exactly what I did NOT need after what I had just experienced in the last 24 hours. Luckily, my dad was there to vouch for me and I finally got upstairs.

My kid had a huge gauze bandage around his abdomen protecting his liver and was hooked up to a massive ventilator. But no more glass box. Whew. The surgeon was running a little behind, so I got to hold him for a few minutes. My wife had just finished with the insurance place and was sprinting up to SLC hoping to see our son before he went in for surgery. She got there with some time to spare and got to hold him as well. It was a nice tender mercy for both of us.

Then the surgeon came and his team wheeled our son off to the surgery room. The surgeon again explained he would try to cram the whole thing in at once and call it good. But he wasn't sure if it was possible. So we sent him off and went into the waiting room. About 50 years later (2 hours), the surgeon came out and said everything went great. 

You closed it up?! 

"Well...I didn't close it up quite yet, but I got pretty close."

"We'll plan on another attempt in two days."

Two days? But that's...in two days.

It blew our minds how quickly the surgeon wanted to proceed with a one-day old baby. But he assured us everything would be just fine doing another procedure that soon.

It is unbelievable how much medicine and technology has progressed. We are eternally grateful for this surgeon and how much he took care of our son.

So we headed back upstairs to get a look at our little boy. We were prepared for the worst...we had no idea what to expect with seeing his liver almost in his body, but not entirely. Thank goodness for gauze...

The surgeon had sown a mesh fabric into his skin and used that to build what he called a tent. He would be using that tent to slowly stretch his abdomen skin and muscles together. Again...this kid is one day old.

I'm done for the day when I get a paper cut...how is my son already tougher than me?

Granted, he was on alot of medication...aloooooooooot of medication. Like paralyzing medication. He literally looked dead when I first saw him because he wasn't moving or breathing himself. He was on a ventilator that was breathing for him. Upon closer inspection, I could see him vibrating with the ventilator.

Can we hold him?

"Absolutely not. Not for several weeks."

And the good times keep rolling...

But hey...good news, I found my wallet later that day!

The First 24 Hours

UPDATE: My wife and I have started our training to learn how to feed our son through his nose and how to check his oxygen and other stuff. We've started doing live trial runs where we are staying overnight at the hospital and trying to do everything ourselves. Sad but true...I've been spoiled the last 8 weeks. No waking up in the middle night because he's crying, no being awake at ungodly hours, no having to coordinate with my wife who's turn it is to wake up. But now...it just got real. We're actually doing this. Actually becoming parents. We are doing about 90% of the work with him now. Because of that, it's 1:30am and it's my turn to feed him. The feeding takes about an hour to complete, so I have some time to sit down and keep going with the apparently entertaining blog I've started. It's been unbelievable how many views I've had on this blog since I started it. I never expected that many people to read it. I better make this even more entertaining to make it worth your times. But thank you so much for your positive comments and feedback. It's been a blessing to see how much we are loved even though we've basically fallen off the face of the Earth with our son.

Anyways...

My last blog post left off with us handing off our son to the NICU team at the hospital. They would decide his future. Because of his omphalocele situation (liver was outside his body), he would need several surgeries to get it inside his body and functioning. I was exhausted, my wife was exhausted, we were both ready for a nap.

But our baby looked so helpless. Even though I don't especially like babies, I liked this one. He had curly hair just like mine and looked so peaceful when he was sleeping for the short 3 seconds before all the nurses started poking around at him.

My wife was already back in her room recovering while I was hanging out with the team of about 20 members. If there's one thing I hate, it's large groups. I can't stand large groups. Especially when they're all talking at the same time.

The surgeon started telling me all about his plan how he would approach this situation. Because the liver was inside a membrane, the whole thing was too big to fit snugly in our son's body. In a couple of days, he would try push the liver into the body as much as he could, then leave it for a week. Push it some more, then another week. Then more. And so on about 4-6 times, then stitch our kid up and send him home.

Umm. That seems quite uncomfortable. I wasn't impressed with that plan, but it seemed like the best thing to do.

Then all twenty people in the room wanted to talk to me at the same time about twenty different things. I think I now understand how celebrities feel. There was the head nurse asking me to sign all the papers, there was a social worker wanting to know if I we needed help paying bills (exactly how expensive is this going to be anyways?), there was the receptionist trying to tell me how to get back in the NICU if I left, and there was a lady who kept asking me if I was hungry. I'm always hungry. But she never did get me any food...

That mess combined with my lack of sleep plus my abnormal range of emotions in the last 24 hours was making me a bit cranky. I think they must have noticed because they gave me some apple juice and sent me off to my wife's room as well to get some sleep.

Sleep? Yeah right. I don't want to sleep on that stupid couch again. I want the bed.

Once I arrived to her room, we were transferred to a smaller recovery room. No couch. Just two oversized chairs and a bed. Forget that. I snuggled with my wife in her bed for what felt like 12 seconds (really, it was 30 minutes) when our nurse came in with a grim look on her face.

This day was not getting better.

They had done an echocardiogram on our son's heart. Remember when he had a hole in his heart and the heart doctor said it wasn't going to be a problem after he was born?

The surgeon saw the hole in the heart and also found a possible issue with one of his valves. He immediately backed out of the surgery. He wanted no part of the risk of the heart stopping or something during the surgery. We were being transferred to the Primary Children's hospital where they would do the surgery.

Oh, okay. Sounds good. So we'll just drive him up there tomorrow or something?

"The ambulance will be here in 30 minutes. Be ready."

Ambulance...? My desire to ride in an ambulance with the lights on just for fun since I was 10 years old quickly vanished.

Good thing my mind hadn't come back to reality yet. I still felt like I was dreaming. In the last 12 hours, I had seen things that I'm pretty sure 90% of people have never seen before. I had heard medical terms I'm pretty sure were 90% made up.

Ambulance? Okay, sure, why not? How much worse can this day get?

But, what bothered me the most about riding in the ambulance was that my wife had to stay behind. Only I got to go since she wasn't quite recovered yet from the delivery and couldn't be discharged from the hospital. This was HER kid! She wanted this kid more than me! She should get to go too!

Nope.

So I packed up my things. Really, just my toothbrush. I hadn't planned on staying more than one night away from my home. Headed back up with my wife to the NICU where I saw my son about to be placed into those scary glass boxes where you can only put your hands inside.

And that's when I finally lost it.

I had been doing so good for so long.
4 months of holding it together after we found out the diagnosis.
24 hours removed from a doctor telling us we had to get the baby out immediately or he might die.
9 hours of watching my wife go through labor and hoping they would both make it out alive.
3 hours after he was born of wondering what would happen to him...

I had been doing so good of staying numb to the pain and anxiety and pretending nothing was wrong.

Seeing my son in that glass box getting ready to be loaded into an ambulance was when the magnitude of the situation finally hit me like a ton of bricks. I just couldn't hold myself together anymore.

After a few minutes, I kind of regained my composure, said goodbye to my wife, and followed my son and the paramedics into the ambulance and off we went to SLC.

A good friend of mine suggested I write down my thoughts and feelings. They were still raw and it would be a good experience for me to look back later and read them. So I did. I filled up three pages. It felt good to get it all out.

What amazed me about this whole experience was how calm our son was. Sure, he cried a little right after he was born. But once he was put in the NICU, he was pretty calm the whole time. He slept the whole way up to SLC. Maybe it was the medicine. But whatever it was, it was contagious. The whole ambulance ride was just a calm feeling with him, me, and the two paramedics. It was like we all knew everything would be alright.

We arrived to the hospital and I met with the surgeon right away. He told me his plan would be a bit more aggressive than the original surgeon's plan. He wanted to try to squash the whole liver inside the first time and call it good. I was so emotionally and mentally spent after talking with so many people that day, I couldn't even process what was coming out of his mouth. The only thing I understood was:

"Surgery first thing tomorrow morning."

Yep. Of course. Our superhero son can put up with anything. Including surgery less than 24 hours of being born.

My parents live pretty close to the hospital, so after the surgeon finished explaining his plan of action and I signed my consent, I went home with them and completely crashed.

It would be nice if I could just wake up from this nightmare.

The Delivery

So here we are. We just found out we have a warrior son in the womb. In case you missed the last post...basically, our son was supposed to be born with all his bowels and organs floating around in a big membrane outside his body. But he decided he would rather just have the liver outside so he somehow sucked in all the other organs even though it was "scientifically impossible".

Our biggest concern now is whether or not we should be nervous about how soon our son could take over the world if he had a superpower like that.

We were getting closer and closer to the due date. The doctors decided it would be best to induce my wife instead of waiting for her water to break. We settled on exactly one week early, 39 weeks, for the induction. I started prepping myself mentally...but not my wife. She had been ready since she was 3. We went back to the doctor for one last checkup the week before her scheduled induction date to make sure everything was still on track. The ultrasound showed that our little boy, despite his superpowers, was indeed a little boy. He was in the 5th percentile for his size, which means 95% of babies at his age (38 weeks) are bigger than him.

Huh? Have you seen his father? How is this kid in the 5th percentile? Oh yeah...have you seen his mother? Makes sense now. Anyways the doctor says "alright, let's get you upstairs and get started with the delivery". Remember, this is one week BEFORE the scheduled induction.

What? Go upstairs? What's upstairs? Delivery? Is there a package for us there or something?

"The baby is coming out today. He's too small to stay in the womb, he might be stillborn if we leave him another week, especially with his omphalocele situation."

Well, there goes our grocery shopping date tonight. I was really looking forward to getting a new gallon of milk...

So we make our way upstairs...checking once again to make sure it's not April Fools Day. The baby was coming tonight, two weeks early, whether we liked it or not. We get settled in our room for the night.

What? The father doesn't get a remote controlled bed too?

There was a lot of crying and screaming. Then the nurse finally got a pillow for me and I was able to settle down and get some sleep. Kind of. The couch was specifically designed to make any individual as uncomfortable as possible. I applaud the designers for doing such a great job.

My wife, on the other hand, was drugged and out cold the whole night. Lucky her.

Then the next morning, after around 3 hours of very interrupted sleep, I wake up and see my wife on her side, facing away from me, sleeping comfortably.

The baby came?! They didn't wake me up for the birth?!

I stumble over and ask my wife where the baby is. She points to her tummy. Oh.

Right on cue, the nurse comes in and beams at us. "Are you ready?!" It's 6:00 in the morning. No I'm not ready.

I'd like my turn in the bed, please.

We wheel my wife into the delivery room and 3 hours later...

this happens.

We had been warned the omphalocele would look pretty gross when the baby first came out. So we were prepared for that. It was gross. His liver just hanging out on his stomach in an ugly green membrane. I'll spare you the picture. (You can email me if you really want to see it...)

But giving birth is gross anyways. We were just happy to see our boy screaming and crying and alive. The nurses did a quick look over. His lungs were great, his heart was beating great, he had 20 digits and the right amount of body parts. Just that...monstrosity...on his stomach...I still can't get over it.

My wife got to hold him for a few minutes, while I stood over in the corner trying to process what had just happened and debating with myself if I should fake passing out just so I could get a nice nap in that super comfortable remote controlled bed...

Then, he was whisked away to the NICU for more evaluation and to determine a plan of action with surgery and stuff. We had done everything we could up to this point, but now everything was out of our hands. Like it was ever in our hands... Time to hand him over to the professionals.

Probably the hardest thing I've ever had to do...trust a bunch of people I've never met to take care of my firstborn...

The Diagnosis

When my wife found out she was pregnant, she was psyched out of her mind. It had always been her dream to become a mother of at least 12 kids (12?! someone please tell me I'm not the only one who thinks she's nuts...) I was thinking more like 0....maybe 1. Anyways, I eventually warmed up to the idea and became pretty excited too.

Still have no idea how they can tell it's a boy...

I had always hoped for a boy. I wanted someone to teach how to play baseball and basketball and someone to share my passion for sports with. When we went in for our 20-week ultrasound check up, sure enough, we were having a boy! I was pretty excited that we were having a boy, but managed to keep my cool. Didn't want my wife to think I was actually excited for a baby...


The ultrasound technician noticed something abnormal in the ultrasound and told us to sit tight while she went to get the OB/GYN. Abnormal? What are you talking about? Our baby's obviously perfect...are you looking at the same screen as us? She came back with the OB/GYN and he told us the news that would put our lives on an emotional roller coaster for the next several months...

"Your baby has OMPHALOCELE." 

What's that? You're just making up words...

"His bowels and organs are just floating around in the womb. They're not inside his body like they should be."

Is this some kind of sick joke you play on all first time parents? Wait, is today April 1st?

How is that possible? How did we mess up? We had been so careful with my wife's diet and health...What does that mean for him? What does that mean for us?  Questions flooded our minds. Words from his mouth just floated around the room. Words we didn't want to hear. Words no new parents ever want to hear.

I'm not sure.
He might be just fine.
I don't know for sure.
He might not be fine....
He might have genetic disorders.
He also has a hole in his heart.
There's no way to tell right now.
He might have brain development issues.
He might be deformed.
He might need surgery.
We can't really see any details.
He's too small to see anything right now
He might not make it....
Death is a possibility.

Here we are. Two invincible young kids ready to have a baby...getting ripped to shreds over four little words. Death is a possibility. 

We went from excitement from having a perfect little boy to the possibility that we might not even have a baby anymore.

The technician was nice enough to offer some comforting parting words on our way out, "Don't google it. Just don't. It'll scare you." Scare us? What? You think we're not already terrified? We never googled it by the way. Ever. If anyone wants to google it for me and let me know if it's really that scary, go for it.

The next 18 weeks of the pregnancy were filled with nightmarish appointments with a bunch of specialists. Most of them just confirmed what the original diagnosis was. But none of them could give us direct answers to how the baby would be affected when he was born or what would happen to him.

Then finally...we got some good news. The cardiologist told us his heart would be fine. The hole was minor. Whew! One issue down, a million to go.

We had several appointments with ultrasound specialists who explained to us that apparently all babies originally have all their bowels and organs floating around for their first 7 or 8 weeks, then the stomach skin closes up around the organs, keeping them inside. After that point, especially after 20 weeks, if the stomach skin closes and the organs don't come inside, you can forget about them ever coming inside before the baby is born. Meaning surgery would be required to put them inside.

That was the case with our baby. But more good news, we met with a pediatric surgeon. He was a bit overconfident in his skills and experience with operating on omphalocele babies. He assured us everything would be just fine. We finally had hope for a brighter future.

Then...about a month and a half before before our baby was due, we had another appointment with another ultrasound specialist. We go in and my wife gets ready for the ultrasound and the extremely impatient specialist gets started and the first thing we see on the screen is this image.

"I got this. Don't worry about it".

Our kid was giving us the thumbs up. Even though it was probably a dumb coincidence, it gave us so much hope after a miserable 4 months of worry and uncertainty. The technician poked around and checked her files and sighed. "Can you tell me why you're here?" We explained to the best of our knowledge what was happening with his bowels and organs floating around. "What? I don't see that." You don't? (Even though we had been through about 1,000 ultrasound appointments, we still couldn't tell what any of the blobs were...) You can't see it? "Nope. Everything's inside." What? Are you sure? (groans) "Yep, look at this...it's all inside. Whoops there's the liver, barely missed that. Yeah the liver is outside. Everything else is inside."

Are you kidding me? Our kid had the nerve to give us the thumbs up as if it was no big deal he somehow sucked in all his bowels and organs (except his liver) inside his body like a human vacuum, even though it was scientifically impossible? 

That's when we realized our kid was a warrior.

How I Became the Newest Stay At Home Dad

The guy responsible for my new job.

See the guy on the left? He's the one that threw my life out of whack. Ever since that day in Sunday School when I was 8 when our teacher asked us to describe what marriage was like, I had imagined myself as the studly breadwinner--the superhero husband that had a job that paid 100k who would come home everyday to his loving wife who had dinner ready, and to his kid(s) (I only wanted one back then) who he would play with all night till it was time for bed.

Then I actually got married. A few months after we got married, my wife beat me and graduated college and got a big girl job with a salary (just barely under 100k...by about 70 thousand), and I still had over two years left of college.

Our first year of marriage consisted of me going back and forth between three or four part time jobs while she held down the fort with her consistent full-time job. Then she got pregnant. She was stoked out of her mind. I was still wrapping my head around the fact that I was about to be a dad of a species that I have never been fond of...babies.

I eventually got around to putting up with babies (with some practice with our friends' kids). Our precious little boy was born in April and we were ready to start life with my wife working her full-time job, me having 2-3 part-time jobs, and being in school full-time. It would all work out spectacularly with our schedules right? Oh wait, we had a baby to take care of too.

Obviously, she would stay home full-time while I went to school and became the breadwinner with my pathetic part time jobs right? Wrong. We needed the stability (not to mention the health insurance--lifesaver!) of her job. So we talked about it and decided we'd need an unconventional role swap.

I am now the newest stay at home dad while my wife brings home the bacon. We decided that I will not be taking classes next semester and instead I will try my hand at working a couple of jobs from home while taking care of....a baby.

And do I have any idea what I'm doing? Absolutely not. This blog is dedicated to all my adventures as I grab and claw my way through learning how to take care of my son while my wife gets off easy (just kidding...)

Anyways, since we've been at the hospital for so long, we've gotten out of touch with some family and friends who are understandably out of the loop on what is going on. I'll be putting up posts that will completely explain what is going on with our kid and his progression. If you'd like to follow this blog, type your email at the top of this page and looks like every time I post something, you'll get an email notification and you can come and check it out.

Again, thank you all for all your love, thoughts, and prayers! We are looking forward to starting this new chapter in our lives.