$$$

Some of you have asked about our medical bills and how many generations of kids we'll have before it's all paid off.

Little background about me: I am a massive personal finance nerd. I track every expense we make and I know exactly what our net worth is and how much money we save every month. I'm also a massive Excel spreadsheets nerd. Just ask my wife. I have about five or six different sheets detailing our financial lives. Put those facts two together and you wouldn't be surprised to find out one of those spreadsheets has actually been tracking every single insurance claim made on our son and by taking one glance, I know exactly how much he's worth. Want to see?

 

These are the totals of all the claims just from April 15-September 1, 2015 (the date my wife's insurance expired)

See column C: $471,396.83? That's what we'd owe if we didn't have insurance.

See column J: $4,000? That's all we ended up owing thanks to my wife's spectacular health insurance and out of pocket maximum!

If my math is correct, that my friends, is a savings of 99.15%. Talk about Black Friday deals. 

Some fun facts:

-See the row number, 173? If you take away that row because it isn't a claim, and take away row #1 because it's the titles of the columns, that means our son had ONE HUNDRED AND SEVENTY ONE claims in his two months of existence. That is ridiculous. How many do most babies have? Like zero because the delivery is charged to the mother's name, right? 

-The ambulance from Provo to SLC, a mere 50.4 miles according to Google Maps, billed us for $10,265. Outrageous.

-Our son had a total of 32 X-Rays costing $1,238.60 in two months. We're just waiting for him to become a radioactive mutant any day now.

-He had 7 echocardiograms and received anesthesia 5 times.

-Each night in the NICU cost $1,099.48 in case anyone was wondering and wanted to book a romantic getaway there. But that was just to STAY THERE. That doesn't include any of the medicine or care or anything else. So multiply $1099.48 by 61 nights and you get a boatload of money. 

-Even more of a boatload of money was a silly charge we got called "Comprehensive Costs" which is the medicine and the care and the everything else. $366,761.84. I kid you not, that bill was actually sent to us in a UPS package because it was so thick. I think it was around 60-70 pages long. That bill itemized every single mL of medicine he got and most of them cost under $1 per mL.

-The most expensive charge was his second surgery, which cost $27,261. Strangely, his first, third, and last surgeries were $2,484 each. Not sure what was so special about the second one.

-My favorite number: Column K which is how much we have remaining! We'll have all the NICU bills paid off in a couple months. 

But the bad news is my wife's insurance expired in September, so we renewed it and began a new billing year. Two weeks later, our son found himself back in the hospital for two weeks with a virus. So we have another deductible and out of pocket maximum to cover. But on the bright side, we maxed out two weeks into the policy so any medical bill for us for the rest of the policy year is free!

Ogden Nightmare

A few weeks before we brought our son home from the hospital, my wife registered to attend a professional development conference in Ogden, about an hour and a half away from our home. At that time, we thought our son would still be in the hospital, so it'd be no problem for her to go to the conference. She even got a free night at a hotel, so we thought it'd be perfect for her to go and get the credits she needed for her certification, and I wouldn't be tasked with the responsibility of taking care of anyone except myself (which is already hard enough...)

As the conference date approached, our son started improving by leaps and bounds and was suddenly getting ready to go home. One week before the conference, his nurse approached us about taking him home. The conference didn't even come up in our minds; we were terrified about having to learn all the complicated tasks and duties we'd have to take over once we all went home. Three days before the conference started and one day before we went home, it came to me.

I turned to my wife and said, "Hey. Don't you have a two day conference coming up soon?" 

She looked at me and thought for a few seconds. "Yup."

"Does that mean I'm gonna be home alone with the baby for a whole 48 hours with no prior experience of taking care of kids...ever, let alone a two-month old baby fresh out of the NICU?"

"Hmm..yup."

"Sounds great."

Then I excused myself and went to the bathroom and grew up really fast. I was no longer a mere mortal who hated kids. I was now "Super-omphalocele-dad" who could do anything. 

We were released from the hospital the next day, and made our way home with about a million boxes full of supplies and heads crammed full of information.

Our son went home with an oxygen tube, a feeding tube, and a horrible device called an oximeter (which I will discuss in a later post) hooked up to him. 

We got through the first night and first day with no incident, while I was trying to absorb as much information as I could to prepare for a whole 48 hours by myself with no outside help. 

The next day, my wife packed up and left me.

It was just me and my son. Against the world.

Or so I thought.

THOSE 48 HOURS WERE THE MOST STRESSFUL 48 HOURS OF MY LIFE. 

My son decided to turn against me. He took note of every possible worst case scenario that I prayed would never happen and made sure they happened.

He ripped out his feeding tube WHILE THE FEEDING MACHINE WAS RUNNING.

He made sure the oximeter beeped every 5 minutes, setting me into a frenzy because I THOUGHT HE WASN'T BREATHING.

He removed his breathing tube without me knowing WHICH IS WHY THE OXIMETER BEEPED EVERY 5 MINUTES.

He would wait until I'd run and take a 2 second bathroom break and VOMIT ALL OVER HIS CLOTHES, BLANKET, AND MY BED.

He made sure to set off a pee fountain ALL OVER ME WHILE I WAS CHANGING HIS DIAPER.

He screamed his lungs out THE ENTIRE TIME I GAVE HIM A BATH.

DOES HE EVER NAP?!

I probably did not sleep the entire time because I was constantly waking up in a panic because I had these horrible recurring dreams that I accidentally dropped him and killed him.

Looking back, I can't help but chuckle. I was such a noob dad. 

Now, 5 months later...feeding tube ripped out while the machine is running? No problem. Let me calmly click pause and slide that thing right back in.

The oximeter is beeping? Please. That means nothing to me now. The silence button is now my friend.

Breathing tube removed? That's ok. I'll pop it back in for you.

You vomited? Let me whip out my handy dandy wipe box and get you all cleaned up.

Pee fountain? Not today with my lightning quick diaper changing skills.

Bath of a million screams? I finally got him to take a bath last week with zero screaming. Possibly my proudest accomplishment as a father thus far. 

Just give me a job in the NICU already. I know how to do everything now...

My wife and I fondly refer to those 48 hours as the "Ogden Nightmare".

When my wife got home from her blissful "vacation", I took one look at her and said, "Your turn." And I went to bed and took a well-deserved nap. 

3 days later (I wish), I woke up and I was a completely new person. I had been cleansed by fire and I was reborn as a stay-at-home dad.

I'm writing this post while my son is napping. He'll be 8 months old tomorrow. Feeding tube is snugly in place while the feeding machine is running. He has no breathing tube now. He has no oximeter now.  His diaper is clean (I think...), pee fountain free for 12 days now. He's down from 8-10 vomits a day to just 1 or 2. I gave him a bath this morning and I'm pretty sure I saw a teeny tiny smile that lasted a nanosecond. He probably won't admit it, but I saw what I saw.

Ever since those 48 hours, I feel like I can conquer the world.

Going Home!

Hi again everyone,

Sorry again about the weird blog shutdown. Something happened with my URL and I wasn't able to "own" it anymore. So the blogger people wouldn't let me open up this blog again until I changed my URL. So the brainstorming for a new name began and continued for about....2 months. This is the best I could come up with...omphaloceledad.blogspot.com. Sorry for forcing you all to learn how to spell a word you'll probably never use again in your life...hopefully.

For those of you who are newcomers to this blog, my wife and I had a baby boy in April. He was perfect, except he was born with a condition called Omphalocele. Read the rest of my posts to get all caught up.

Anyways, the general story of the NICU is just about wrapped up. After he finished all his surgeries (4 in 10 days), he stayed in the same area for another 6 weeks while learning how to breathe on his own. He was on a massive ventilator, but eventually weaned down to a little oxygen machine. Once he was doing well, he was transferred to a a non-intensive unit where he had less nurses watching him and my wife and I were able to finally transition into becoming his primary care takers. He stayed in that room for about two more weeks, then after a grand total of 61 days, he was free to go home! It took long time for reality to set in for us that we were actually going home WITH OUR SON.

We knew we'd go home with him eventually but it didn't feel like we ever would. We were becoming very numb and stale to feelings/emotions. We just went through the motions for a long time while not seeing any signs of improvement. He was making slow, steady improvements, but not overnight. It was not immediately noticeable.

So when the nurse approached us about going home in a couple days, we were taken aback. "What? He's ready now? But he still has a feeding tube and a breathing tube, does that mean he'll be off those soon? Because there's no way we're going to take care of his tubes, right?"

Wrong.

We spent the next couple days learning how to take care of his tubes. Fortunately for us, he only had three wires left, down from the high of 18. We learned how to insert his feeding tube through his nose, how to insert his oxygen tube, and how to attach him to an oximeter to measure his oxygen levels.

Overwhelming.

The first time we tried to insert his feeding tube, we felt like we would be sent to hell for abusing a sweet little boy like that.

Then we got used to it. And guess what? He pulls it out on an average of 2-3 times a week. And we put it back in. Every time. He hates it. So do we.

#lifewithanomphalocelebaby.

So anyways, over the last several months, we have had some weird/funny experiences that we'll be posting that can only happen with a baby like ours and updates and other stuff so all your questions and hunger for updates will be satisfied.

Hopefully this blog can also be used to restore faith for other Omphalocele parents that someone else went through it and so can they. If you ever find someone who has a baby with this, show them this blog! We'd love to connect with them.

FAQ

Again, thank you all for your love and support!

We understand part of that means you will have questions. Lots of them. We have been asked the same ones over and over....and over....and over.

We thought about making a spiffy FAQ sheet that we could whip out every time someone started rattling off questions, but worried that we might come off as snarky so we decided against it...

Part of it is probably my fault for being a massive failure at keeping this blog updated. But I am going to try to stay motivated and finish up the NICU series this week and then I can start posting more current updates on how he's doing.

Maybe this post will be sufficient enough to at least get rid of those common questions and you can start coming up with new ones :)

Q: How is your baby?
Outstanding. He'll be 5 months old tomorrow. My favorite part about him is he sleeps through the night and usually sleeps in till 9am. If he sleeps in, I get to sleep in too! He's starting to smile and laugh when we play with him. He's also starting to discover his hands and learn how they work. He's getting bigger and bigger everyday.

Q: What's wrong with him?
He was born with a condition named Omphalocele. This basically means his bowels and organs did not go inside his abdomen as they were supposed to. Apparently, all babies are created with their bowels/organs floating around in their mother's tummy, then by 7 or 8 weeks, the babies' organs are pulled inside their own tummy and it closes up. Our baby didn't do that. Except he decided to be a superhero and somehow sucked in most of his intestines and organs even when doctors said it was impossible. He was born with just his liver protruding from his abdomen. His situation was a lot less serious since it was just his liver.

Q: How did he end up with Omphalocele? Is it genetic?
It is not genetic. About 2.5/10,000 babies are born like that. There are no known causes. Believe me, we've already asked every single specialist we saw why this happened. It just happens. It is not genetic. My wife did nothing wrong. I did nothing wrong. Not like I could have done anything wrong...

Q: Does he have other "issues"?
He does not have any other issues! He went through four surgeries to get that liver shoved back into him and now the liver is functioning great! He did have high blood pressure for awhile but that was his kidneys not cooperating. But that's under control and the rest of his body is functioning like it's supposed to.

He is understandably behind on his motor and muscle development. He was immobilized by sedation and a ventilator in a hospital bed for several weeks before he was even allowed to try to move by himself. He now has three different therapists that visit our home regularly to help him get all caught up on that.

Q: What is he behind with?
He is almost 5 months old, but is right around the 3 months stage of development. He is finally starting to build strength and have control of his neck. He's starting to discover his hands and we're trying to teach him to grasp objects and bring them to his mouth. He also doesn't take food orally like most other babies. We are working on that as well.

Q: How will this impact his future? Will he be a "normal kid"?
What does normal even mean? I hope he's not normal. I hope he has his own personality and lives life the way he wants to! But "normal" as in he will be able to eat, walk, dress himself, do his homework, go to church, and play sports? Yes! He will grow up to do whatever he wants to do. Just needs to get caught up on his development and he'll be just fine.

Q: Is he gonna be able to play sports?

He's my son. He will play sports.

Q: Will he have to go to special needs classes?

His brain is developing great, his body is developing great. So if he does end up in special needs classes, it won't be a direct result of his Omphalocele.

Q: Does that mean his liver doesn't function? What about his other organs?

His liver is functioning as well as it can possibly function. His other organs are not affected anymore. After his surgeries, there were some concerns about his kidneys because he consistently had high blood pressure, and his lungs because they were being squished up by his liver. But his blood pressure is finally going down to a good level and his internal cavity eventually expanded to fit his liver so now everything fits all nice and cozy in there.

Q: Will he need more surgeries?
All the surgeries related to his Omphalocele are done! He does still have a small hernia that will need to be repaired in a couple months. But that surgery will be an outpatient surgery, meaning he'll come home the same day.

Q: What's that weird orange tube in his nose?

That is called a NG tube. It is where he gets his milk. Since he had so much negative experiences in the hospital with his mouth, he did not accept his pacifier, breastfeeding, or a bottle. He did not even start trying milk until he was about 6 weeks old. He so behind on his "sucking" skills that doctors did not want to wait for him to catch up before giving him milk. So he was hooked up to that NG tube to get his milk. We are still working on helping him acquire that skill so he can eventually feed himself without the need of the NG tube.

Q: When will it come out?

When he starts eating! There is no timetable. We are following his pace and development. He has had it for about 4 months now. But we do not plan on letting him keep it forever. He can put it in his treasure box for cherished memories if he wants, I guess...

Q: Will he ever be able to eat?

Yep. We have a swallow study with him later this month, and if it goes well, we could be approved to start feeding him solid food through his mouth. He will get some of that through the mouth while being gradually weaned off his NG tube. Again, no idea how long that will take.

Q: How long did you stay at the hospital?

61 days! He left exactly two months after he went in, to the day.

Q: Was it expensive?

We had already saved up for this birth, so we were prepared for the bills. My wife has fantastic insurance through her job, so our max out of pocket expenses were only $4,000. But I've been keeping track of all his bills cause I'm curious how long we'd be paying this off if not for insurance. Last time I looked, it was almost $500,000. I'll have to post the link to that spreadsheet later. It's pretty wild.

Q: When are you gonna be able to bring him home?

Some people are really behind on news. He has been home for several months now....thank goodness.

Q: Can you take him places?

Yep. He loves going out on walks with us and going to Daddy's rec league softball games. We haven't taken him to our church yet though. He's ready to go to church. I'm not. I'm still bracing myself for the inevitable extra attention we'll be getting. We did bring him to Regional Conference yesterday though. He cried the whole time.

Q: Are you gonna have more kids after this experience?

We're planning on it. My wife still wants 12 kids. I'm still working on whittling that number down. At least into the single digits...

And our personal favorite:

Q: Wait, you had a baby?
Welcome to life out from under a rock!

More surgeries

Surgery #3 came and went with no issues. Our boy was still on heavy sedation and a massive ventilator. We still haven't been able to hold him. The only thing we could do was touch his hands and his head. Surgery #4 was scheduled for a couple days later, making it 4 surgeries in 10 days. The surgeon was optimistic that surgery #4 would be the last one, but he didn't want to give us false hope, so he told us to "plan on another one after this one". So we did.

The day of his fourth surgery, we went back downstairs to the surgery prep room. Did what had become a routine of answering questions and giving consent for a bunch of stuff we didn't even want to think about, kissing our boy good luck, and leaving him in the hands of people we didn't even know. We went into the waiting room and waited for what felt like an eternity. This was definitely the longest wait of them all. The surgeon had estimated 45-60 minutes, but I think we waited for 2 1/2 hours. It was the worst feeling. Why was he taking so long? Was it a good thing because he was taking his time to make sure this was the final one or was it a bad thing because there were complications?

Finally, the surgeon came back and gave us the news:

"Well, it all went great. He's all closed up and about to be taken back to his room to rest."

He's closed up? It really happened? So when can he come home? Maybe next week?

"It'll be at least another 4-6 weeks before we can start talking about him going home."

That was a tough pill to swallow. We had seen him apparently "doing fantastic" because of the fact he was able to go through 4 surgeries in 10 days. Who else could even go through that? At this rate, he'd obviously be ready to go home by next week...

Why so long? He needed time to allow his internal cavity which had been functioning without his liver in there to expand and make sure everything fit. He had to let the stitches/scar on his abdomen heal and make sure there was no infection or anything like that. He had to get off his ventilator and start breathing on his own. He had to start taking milk instead of the weird Gatorade stuff he was on. He had to get that ridiculous blood pressure down. He had to actually open his eyes for more than 3 minutes....that's how long and heavily sedated he had been. There were so many milestones and things to check off. That was when reality set in. We were in this for the long run. We were officially "proud parents of a NICU baby". That slogan was everywhere in the hospital...on posters, on bracelets, on keychains, on lanyards, on everything and I hated it. Sure, I was very, vey proud of my NICU baby and how he was progressing, but I wasn't proud to be a parent of a NICU baby. I hated that constant reminder that my kid was in the hospital and there was nothing I could do about it while I looked on Facebook and saw all my friends with these perfect 8 lb, 2 oz babies at home in their cribs, looking like they were all happy and nothing wrong would ever happen.

But now...I wouldn't trade that experience for any of those "perfect babies". I eventually converted and embraced myself as a "proud parent of a NICU baby". I had this nifty ID badge that got me in any room in the hospital I wanted and got me all the food I wanted. While all these perfect babies' parents were shelling out money for diapers and food, we were getting ours free, courtesy of our insurance. Pros and cons, I guess.

Anyways, on the way upstairs, it was mixed feelings. We were thrilled he was all done with the brutal surgeries. But another 4-6 weeks...at least...don't these people know we have lives and all kinds of plans to do with our son this summer? We certainly did not want to spend any more time in the hospital.

Once we got there and took a look at him, we knew everything would be alright. 4-6 weeks was nothing compared to the eternity we'd get to spend with him. We could do it. We didn't want to. But we could.

We made a mental note of how many wires he had coming out of him (I think we counted 18 at one point) and made that our countdown. We promised each other to not start talking about potentially going home until he was down to 3 wires. We buckled in and braced ourselves for the rest of our NICU adventure.

After the First Surgery

UPDATE: Thank you to everyone who has been nudging me to keep up with my blogs. I never imagined so many people would actually be interested in my life (or maybe it's really my son's life you're interested in...). Sorry for the long absence. As many of you know, our son is finally home. He has been home for a couple months now. He was in the hospital for a grand total of 61 days. 61...long...days. It's been great to have him home and actually interact with him rather than just sitting in a miserable hospital room and staring at him. 

Of course, I greatly underestimated the amount of work it would be to take care of a baby while working a couple part-time jobs. Thus, the reason for my absence from this blog. But today was my last day at my last part-time job. Tomorrow, my wife goes back to her full-time job and I officially begin my tenure as a full-time stay at home dad. I've been practicing for this day all summer! I can almost beat my wife in a race of who can put on a diaper the fastest...and I'm getting pretty good at cleaning up vomit. 

So with my sudden increase of time at home, hopefully you can expect a more steady stream of blog posts with more tales about our lives as NICU survivors.

Anyways, to resume where I left off on my last blog post, our son had just completed his first surgery and the surgeon was optimistic that he could have his second surgery in just two days. To recap the surgery process: our son was born with his liver protruding from his body in an ugly green membrane. The day after he was born, his surgeon tried to push the liver back into his body and stretch the skin together over the liver then sew it up. He was not successful on the first attempt, so he built a mesh tent in the skin so that he could keep stretching the skin more and more each time until it closed up. Sounds fun, right?

We had imagined that our son would have a good period of time to rest before the next procedure. Only two days to recover? Okay...so two days later the surgeon comes back and whisks our son away for procedure #2. We go down into the surgery waiting room and only wait for about 30 minutes before the surgeon comes back. Another great procedure....but the skin was not quite closed yet. "We'll let him rest a little longer this time....we'll give him five days." It was weird. We thought two days was way too fast. But when we found it out it would be a five day wait for the next procedure, we felt like that was forever away! We just wanted our boy to be all healed up right there and then. I don't know, I think we were just expecting him to magically be all healed up and ready to go home in less than two weeks. It was a bit tough when reality set in that he would be staying in the hospital for awhile and there was nothing we could do about it.

I think the toughest part about the whole staying at the NICU was the room he stayed in. It just had a terrible "hospital-like" vibe where we were almost expecting someone to die suddenly (luckily, that never happened while we were there). We had to wash up to our elbows with special soap every single time we wanted to go inside and visit. The chairs were uncomfortable. It was dark and depressing in there. But strangely, some of our happiest moments with our son happened in that room. The first time he opened his eyes and looked at us...the first time he gripped our fingers, the first time we were able to hold him, sitting watching him grumble in his sleep and being grateful he was still alive.....the worst love-hate relationship I've ever experienced.

Every day was so unpredictable whether it would be a good day or a bad day for him, or just an average day. Every morning when we woke up, my wife would call the hospital for an update and I remember studying her facial expressions and being able to tell just from that what kind of day it would be.

Each room in the NICU can hold up to 4 babies. The whole time we were there, we watched about 7-8 babies come and go. It was tough on us to watch these babies recover quickly enough to be able to go home, while we were still stuck there. We wanted so badly to just go home and go back to our normal lives again...

But, the best part about our son's first week of existence? It was finals week!!! Our favorite week of the year! As much as I was ecstatic to take five final exams, I decided it would be best to email all my professors and see if I could work something out so that I did not have to commute back and forth everyday to take all the exams. To my surprise, one teacher let me take it electronically and three teachers let me completely forego my exams because I already had a good grade in their class (kids, that's why you keep studying in college). Only one professor couldn't stand that I would miss out on the fun and forced me to drive back to Provo to take his final. I didn't even study...I was a bit preoccupied with other stuff... like trying to wrap my mind around the fact that I was a father of a NICU baby. I went back to Provo one day that week to gather a few things and I decided to just take the final....and passed! I've never been a good guesser, but for some reason, I was on my game that day.

Next obstacle: I was supposed to begin an internship with BYU. I am studying Facilities and Property Management at BYU, and the program requires students to complete an internship with their Physical Facilities department. But luckily, the internship was very flexible with scheduling and they let me pick my own schedule, just as long as I logged at least 120 hours of work. I decided to work Monday, Wednesday, and Friday mornings. So my schedule for the next several weeks looked like this:

Sunday night: Find a way back to Provo (since the train doesn't run on Sundays...) and sleep there.
Monday: internship 8-12pm, eat lunch, do errands, take the train to SLC.
Tuesday: spend as much time as possible with my family, take the train to Provo, sleep there.
Wednesday: internship 8-12pm, eat lunch, do errands, take the train to SLC.
Thursday: spend as much time as possible with my family, take the train to Provo, sleep there.
Friday: internship 8-12pm, eat lunch, do errands, take the train to SLC.
Saturday & Sunday: stay in SLC with my wife for the weekend, trying to keep busy as much as possible to avoid going insane from staying in the hospital all day.

Rinse and repeat.

Shout out to my brother for buying his truck at the perfect time, and letting me drive his old car around Provo to make everything work out almost perfectly.

That's one thing I will never understand. How everything was supposed to be a disaster, but instead, ended up working out perfectly. Too perfectly....

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.