SLOve Life!

On Wednesday August 7th Everett received his gtube placement surgery. Of course he did fantastic and passed all his tests. The first two days was defiantly a testament on what the future was going to be like.

The first hick up was just days after, with a fever. With numerous other things going on like teething, a running nose plus just having surgery there were so many thoughts about what was happening and why. Thank goodness it was just fixed with TLC and antibiotics.

Now that a couple weeks have gone by he is rocking this tube and I wouldn’t think twice again about getting it. But man….. what a emotional journey! He is still not eating as much as he should and the tube isn’t bothering him much except for cleaning it. He’s still eating by mouth and super busy experiencing and exploring new things. Which sometimes I think it’s maybe because he’s getting all his nutrition and less stress from mom about eating! All the worry seems just like a memory and the future seems bright! If ever asked again about a feeding tube and any feedback I can give to families I say, do it! It’s a lot easier to do then you think. I would say family is also doing a pretty dang good job too!

I wouldn’t change having Everett worth anything. But I know he is always going to need more care then a typical baby. I still have questions like, how long will he have this gtube? Will he be able to talk? When will he start to crawl, or walk? Will he have the life he deserves? All I know is I can give him a endless about of love, and kissers!

When writing my first blog I mentioned Everett’s surgeries briefly. This time I’m going to go over his Surgery Journey in more detail.

Surgery #1. This happened about two weeks after he was born. The leading up point to this surgery was so stressful. Everything happening at birth and the first week home was stressful. Making sure he was eating enough was the biggest priority. After the first week he started vomiting. The first thought was oh, well some kiddos just spit up more then others that’s just how he’s going to be. Then it started happening more and more he couldn’t even keep a ounce down, and kept loosing weight. Between the initial stress of the diagnosis and this, it was beyond stressful. There were many sleepless night and silent tears at night because there were no words to express. I then tried smaller amounts more often. Still nothing. Then came the emergency room because I couldn’t take it anymore. I couldn’t even leave him to go to the bathroom without him vomiting. They ran tests and everything seemed fine. That was the very first time I had that mom instinct that something just wasn’t right. They just thought he was going to be a baby that spit up. Then the same things kept happening more often. My uncle who is Everett’s pediatrician and I really couldn’t thank him enough for everything he had done. He ran more tests and before we knew it we were in Iowa City getting ready for surgery for pyloric stenosis. Pyloric stenosis is a condition where the opening from your stomach to intestine thickens, which causes food not to go through. Which caused Everett to throw up. They did surgery and pretty much just cut the opening so food would pass through. We stayed the night and when he was able to feed well and not vomit we were able to go home. That was the first night I slept so well in so long, because I was so stressed I couldn’t have a good period of sleep. Come to find out this is also a symptom of Smith-Lemli-Optiz Syndrome.

Surgery #2. This surgery was very much planned and thought through. Everett had a tongue tie and also had some abnormalities with his boy parts. They were able to do these at the same time no questions asked, which was amazing! Everything went smoothly and as planned.

Surgery #3. Defiantly hoping this is the last and final surgery that is needed. Everett has always had a hard time eating enough. Through diet change and trying to add more calories he still wasn’t gaining like he should. There was always a stressful feeling of him eating enough and just trying for that one more bite. He was also getting really good at saying no, puckering his lips together or holding his arm against his mouth because he was done. This was when the time was needed for a feeding tube. This is not a forever thing it’s just to make sure he’s getting enough calories to grow and be healthy for his future. Sitting in the hospital after surgery I still have that feeling of, is this still the right choice. Should have I tried a little bit harder? Did I try enough? Just to have another surgery and go through those risks again. Did we choose the easy way out?

Everett’s Surgery Journey in of itself has been difficult. He never ceases to amaze me with how fast he jumps back and how well he takes it. Every surgery never gets easier from the leading up point and the day of. Everyday is ever changing and something new happens often. The best thing is looking into the bright future and what’s next instead of the past.

all our dreams can come true, if we have the courage to pursue them.

— Walt Disney.

Thank you all who have subscribed thus far! If you don’t know already my son was diagnosed with SLOS (Smith-Lemli-Opitz Syndrome) which I can discuss more later. I plan on writing about him, our journey, ups and downs of daily life, as well as what people say of our “typical” life journeys. I hope to make a impact on not only our other SLOS family out there, but expand the knowledge of this condition. I also want to talk about other various things that don’t have to do with this genetic condition. I want to thank you all for your support and encouragement to do this, and say how thankful I am of everyone in my life and this ever changing journey!