Five Guys and Other Randoms

So, shortly after I wrote the last post, our plans for Jared's graduation got derailed by a trip to the ER followed by a weekend stay in the hospital. Since then, we have a new plan for Charlie that we are hoping will work. Essentially, it has been determined that he has "gastroparesis" or, in layman's terms, his stomach is not moving things out the way it should, which is making him feel full, and causing him to not be able to tolerate the volume of food he needs to thrive (or survive). So, on Monday, we are getting what is called a g-j tube, which will be put in through his existing g-tube but feed him directly into his intestines and skip his stomach altogether. The g-j is a temporary solution as they come out of place frequently and so, if it works, we will get a permanent j-tube placed in about a month. The bummer is it looks like this is going to be a permanent struggle for him. I struggled with this a lot over the past two weeks (it wasn't really my plan for him to have one hole in his stomach, much less two and I certainly never thought it would be permanent) but I am choosing to focus less on that and more on the happy, sweet, funny little boy in front of me. He really is a trooper.

One of the things I miss A LOT about California is In N Out Burger (so much so that I think this isn't my first post on that topic). They apparently have no plans to open stores here in Oregon. Boo. Anyway, I love hamburgers. They are certainly one of my vices and not particularly helpful with weight loss or cholesterol but...so it goes. So, I recently tried Five Guys, for which there is a location close to my house. Five Guys is always busy and I've read they are similar to In N Out. By the way, according to new blog rules, I think I need to state that I am not being compensated by anyone for this review. Anyway, back to the burger. I can see why it has been compared to In n Out--you walk inside and it looks virtually identical! That all ended at the order counter. At Five Guys, you choose what toppings you want. There are no pre-determined packages. By that I mean, you add absolutely everything to the blank burger...nothing comes standard. I wasn't expecting this, so I was a little flustered when I got to the counter and didn't know what to do and there was an impatient line behind me. So, I ordered a cheeseburger with lettuce, tomato, mayo, ketchup. I'm sure I could have been more adventurous than this but like I said, I was a bit out of my element. I ordered fries, which, like In n Out, they make fresh there. They do not have milkshakes. The burger was good, but not like In N Out. Definitely better than a McDonalds burger or other major chain fast food burger, but not earth-shattering as well. As my friend Tara pointed out, it was kind of like a backyard grill burger. The fries were better tasting than In n Out, I think. But very greasy. All in all, it was as decent a substitution for In n Out as I am going to get here in Oregon but my heart is still in California when it comes to the In n Out burger.

Graduation!!!

This will be a very quick post--as we are headed out the door. We are headed to Eugene to go to dinner with Jared's parents to celebrate Jared's graduation from DePaul University. This has been a crazy four year adventure--since starting his program, we got married, made two major moves, made three job changes, had two children and have spent countless hours, days, and weeks in hospitals with the kids. Yet through it all, Jared persevered in his studies and is graduating TOMORROW with his Bachelor's degree...and then on to grad school. I am so stinkin' proud of my husband!

"Am-a-namce"

Jack's premature birth was my first big failing as a mother. Now, I know that it wasn't my fault, nor did I do anything to cause it other than being the unfortunate carrier of a defective uterus. However, regardless of fault, a mother is supposed to be able to care for their child. In the weeks that Jack spent in the NICU, I was acutely aware that he was being cared for in every way by people far more qualified than I. The one thing I could do, though, and do better than anyone else, was feed him. My milk was better than anything a nurse or doctor or formula company could provide for him. So, I pumped. I pumped every 3 hours around the clock. I had a little portable, cordless pump that was discreet enough that I could pump anywhere I went. I pumped until he was 14 months old. He grew on my milk and I took satisfaction in watching him grow from a tiny 4 pound baby into a toddler. I learned that feeding your child is one of the most intimate and meaningful acts of motherhood. It is one of the first things that shaped my relationship with Jack, that defined me and set me apart as his mother, uniquely qualified to do this very important thing. Feeding your child and choosing how and what and when to feed them is such a defining characteristic of motherhood. It is probably what ignites such passion in the breast vs. bottle debate.

With Charlie, it was all different. At first, I didn't even want to breastfeed because my experience of actual breastfeeding Jack was such a nightmare. I intended to pump for him but had very little interest in breastfeeding. At the urging of friends and sisters and nurses, I gave it a try when Charlie was born. And it was a totally different experience. He learned to breastfeed easily and it was a good match for both of us. For 6 weeks, he grew. Then, he started arching and crying and refusing to eat. His breathing got bad and his weight slowed. We found out he was aspirating as he drank so I reluctantly gave up breastfeeding and started pumping. We gave him bottles of breast milk thickened to the consistency of honey. But, he still didn't gain weight, his breathing was still bad. So, we had a surgery and they gave him a feeding tube and took away oral feeds altogether. I stubbornly continued to pump and give him breast milk through his tube. He screamed through his tube feedings. His weight continued to decline. He had blood in his stomach. We tested my breast milk thinking perhaps it was light on calories. It wasn't, it was very rich, in fact. So, we switched him to a special prescription formula and he gained weight for the first time in 3 months. I was relieved for him--I want him to grow but I am aware that it my milk was causing him major pain and difficulty. I struggled with that for a long time, even though I am so, so grateful for the technology that has made it possible for Charlie to eat.

Yesterday, Charlie took his first ambulance ride ("amanamce" in Jack lingo), the result of intermittent choking episodes at daycare. Upon arrival at the ER, he threw up some blood. His stools then tested positive for blood. That means he is bleeding somewhere in his GI tract.

That morning, before school, I decide to eschew medical advice and I had given him a teeny, tiny bit of strawberry (we are talking about the size of a newborn's pinky fingernail) because I just couldn't say "no" one more time to him and turn around and give his brother what he had politely asked for. Not thrown a fit over but politely asked for. That's what kills me. I just wanted him to have a taste. He choked, I turned him upside down, whacked his back, retrieved the offending bit of strawberry and all seemed okay again. Until his school called asking me to come quickly. I was certain I must have missed something and he had a piece of strawberry in his lungs. I cried the whole drive there, completely panicked over what I had done. Turns out it has nothing to do with the strawberry and instead he has a small tear in his esophagus, the result, I guess of not being able to tolerate his feeds, and so it is making him cough and retch. The blood from the tear then pooled in his esophagus, he would cough to clear it and then choke and gag on it. That's my non-medical understanding of the situation.

We had a follow-up visit with our GI doctor today. He needs some additional testing to figure out why he can't tolerate his feeds, which are currently at the most minimum level they can be at for his size. He is continuously being fed at a rate of just over an ounce an hour and he can't even tolerate that. I look at Charlie for who he is, not in terms of numbers on a chart but today, the doctor showed me his growth chart and pointed out that he has gained less than 4 lbs in a whole year. I already feel out of control with him. I don't get to choose what to feed him, when to feed him, how much to feed him and I still feel like I'm not doing a good job at that. My baby isn't growing and I don't know why. I am frustrated and I know I am in good company because so far, no one else can figure it out either, but it makes me feel like a failure as a mother. I should be able to feed my baby.

Charlie has been the biggest challenge of my life. I wouldn't trade the challenge for anything but I am constantly second guessing my decisions and choices when it comes to him and these situations like yesterday just make it that much harder. I guess this is what real parenthood is all about? Why isn't there a "What to Expect" book for this situation?

Now, to end on a lighter note (I'm actually not drowning in self-pity over here, by the way)...I want to remember this...this weekend, we were at Costco. Jack loves Costco hot dogs but always eats the hot dog and the bun separately. He had finished his hot dog and we were telling him it was time to go and he said he wanted to bring his bun. So, we said "Okay, grab your bun and come on." All of the sudden, Charlie grabs his bum. We weren't sure he did what we thought he did so we said it again, "Grab your bun," and again, he grabbed his bum. It was too cute. :-)