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.