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.