Brotherly Love

Sweet boys! I promise Ryan had his hands on Eli and let go just for the shot.

GI Appointment

We FINALLY got Clayton in to see a pediatric gastroenterologist on Wednesday. We were referred in late October when Clayton's reflux had been raging. Luckily we haven't had too much trouble with it since then, but our cardiologist really wanted to keep this appointment to discuss Clayton's weight. As far as the reflux goes, the doctor felt we were treating it appropriately, using Prevacid on and off, as needed.

As for Clayton's weight, the doctor wasn't as much concerned with his weight, as he was concerned with his height. It's no secret that Ryan and I are no giants, but we're not the shortest humans to walk the planet either. He didn't feel Clayton's low oxygen and other cardiac side effects would affect his height this drastically, meaning perhaps Clayton is just genetically going to be a really short person. He said we kind of have a "chicken or the egg" problem here. Is Clayton's weight low because he's so short, or is he so short because his weight is low? He doesn't think there is a hormone issue, as Clayton has demonstrated periods of vertical growth in the past, but that hasn't been 100% ruled out either.

He wanted to start with trying to put a little weight on Clayton to see if that would make him grow taller. He prescribed an appetite stimulant, which Clayton started yesterday afternoon. Unfortunately, I didn't realize he'd prescribed a liquid solution. We switched to pills a long time ago because so many of Clayton's liquid meds tasted so bad, and they couldn't be flavored. This tastes terrible. In fact, another mom I know told me she gave one dose to her six year old, and he just started eating more to avoid having to take the med. She pulls it out every now and then and threatens him with it. Great. If Clayton can't stomach it in the next week or two, I'm going to call to see if they can prescribe it in pill form.

Anyway, to sum up, we're not sure if there is a problem or not, but the doctor has a few things he'd like to try to see if he can get Clayton growing a little. He also said that even short and skinny, Clayton is a healthy child. He's not malnourished. I know he sees a lot of hypoplastic left heart kids, and he said Clayton is the healthiest HLHS child he's seen. That meant a lot to me. I told him Clayton is our second HLHS child and that I know how healthy he really is. I just want Clayton to be happy and for him to have every opportunity to live as normal of a life as possible. We go back in 3 months.

Since starting the appetite stimulant:

Dinner: 3-4 bites of pizza
Breakfast: 1/2 kid sized yogurt, 1/4 c cereal with milk
Snack: 2 Tbs peanut butter (yes, he eats peanut butter straight, and I just let him because I'm a desperate woman), 1/4 graham cracker
Lunch: 3-4 bites of pizza

Maybe it just takes a few days to kick in???

Mama's helper

I have a real problem with stuffy noses. I think it drives me insane when I have one, so I'm pretty dedicated to getting stuff out of my kids' noses. Gross, I know. Well, the last two mornings Eli has been introduced to the aspirator. Clayton hasn't seen this thing in a while, so he's been watching very closely.

Well, yesterday I was in the bathroom drying my hair, and Eli was in the bouncy seat behind me. I saw Clayton walk into the bathroom, but I wasn't really paying attention. Then I heard Eli scream. I turned around, and Clayton had the aspirator up Eli's nose, and he was pumping the bulb quite vigorously. Ouch! Poor Eli. I think I scared Clayton to death too as I leaped across the bathroom to rescue Eli. I guess incidents like this are just part of being a younger sibling. Oh, and I put the aspirator up high, so hopefully it won't happen again.

One Month Old

Here are the boys tonight. I drug out the old activity mat for Eli. He wasn't really interested, but Clayton sure was. Eli is one month old today. In some ways it seems like time is flying, and in other ways it's hard to believe it's only been a month.

Here's Clayton on the same mat on his first day home from the hospital. He was two months old.

Clayton's favorite dinner

Lately Clayton's favorite food is... Chili! If it's spicy, chances are good he'll like it. It's been pretty cold today, so chili was in order, and Clayton gobbled it down. Chili is definitely a shirtless dinner food. Although lately Clayton's getting better and better about not making a mess.

ER Visit

First of all, everything is fine with Clayton. We've been extremely lucky with his health. We've only had two emergency room visits before this. Some other HLHS children we know seem to end up in the ER all the time. Clayton has had a little runny nose the past couple days. He woke up at about 1am screaming and wheezing really badly. After about a half hour the wheezing had not improved, and he had thrown up a lot of mucus. Kids like Clayton can deteriorate quite quickly with respiratory problems, so we were concerned. Clayton cannot take any kind of decongestant or use anything like Vicks, so we decided to head to the ER. I really wanted to go with him, but I also knew Eli would need to be fed, and I didn't want Eli in the ER during RSV season with all the germy kids (mine included). We decided Ryan would wait in the car with Eli and we'd switch when Eli needed to be fed. It was about 20 degrees last night, so we knew that would be interesting.

By the time we got there, Clayton was much improved, of course. They put us in an isolation room, due to Clayton's heart, so we didn't have to wait with everyone else. They said it wouldn't be too long. That was at 2:30am. We were finally seen at 5:30am. Eli slept in the car with Ryan until just about that time. Ryan said he'd turn on the car, heat it up, and then turn it off until it got too cool. We had Eli really bundled, and I was actually more concerned he'd overheat than freeze. When we were finally seen, Clayton was fine. His lungs were clear, he still had the runny nose, but he was just fine. We think his throat was pretty sore, and he may have inhaled a little of that drainage, causing him to panic and wheeze.

In some ways it seemed like a waste, but the doctors were very concerned and gave him a full exam. They take HLHS very seriously down at Children's, which I appreciate. We chose to move here based heavily on the fact that Children's has experience with HLHS. Trying to keep Clayton entertained in the middle of the night in the ER was not a fun experience, but in the end we're really glad everything turned out okay. We'll see how tonight goes.

Four Weeks Old

Has it really been four weeks? I guess all the Christmas activity really makes the time fly. Eli has been doing great at home. He's more and more alert everyday. He still sleeps a ton, which is essential to getting anything done. Now we're just working on getting that sleep at night. He seems to have a few good nights and then a really bad night or two. Lately the good nights consist of a feeding at about 11pm, then down till about 3am, another feeding, then down till about 6 or 7am, another feeding, then down till about 9am. So really that's only one real middle of the night feeding, and if Clayton stays down till the usual 7:30 or 8am, I'm not doing too badly on the sleep count. Ocassionally Eli doesn't feel the need to return to sleep after the 3 am feeding, and that's where the night goes south quickly.

Clayton is still enjoying his big brother role. He shares all his toys with Eli, and he even shares his hats, which is a big deal for Clayton. Clayton is still learning about how much love is appropriate for Eli. Sometimes poor Eli would suffocate if I didn't rescue him.

We're so grateful for Eli's good health. I still find myself assessing his color, respiratory rate, chest retracting, etc. I probably will always do that, but so far everything seems to be working as it should. We sure do love this little guy, and we're really enjoying seeing the way he and Clayton interact with each other.