Something's Working

It has been over a week since we started Sam on Prevacid and Nutramigen to help stop his 'colic.' At first it didn't seem to be working at all. The only thing that did change was that he was able to sleep for longer chunks of time at night, which I attribute to the Prevacid decreasing his reflux. But he still cried A LOT and was an absolute kill joy between 6pm and midnight. Following the advice of my sister-in-law and our neighbor, we bought a vibrating bouncy seat. The first night we had it, I was surprised to see that it actually did help. He seems soothed to some extent. It doesn't last forever, but he can sit in it for a while and at least give us some quiet time to eat! But he was still crying at night more than I think is normal.

So I found this stuff called Gripe Water. It's supposed to be a herbal supplement that soothes stomach discomfort and claims to also decrease hiccups (which Sam has in abundance). I tried it for the first time last night and we actually had a really nice, quiet night! I thought maybe it was just a coincidence, but we used it again tonight and had the same results!!! So, somewhere between the Prevacid, Nutramigen, vibrating bouncy seat, and Gripe Water, it appears we have taken Sam from unbearable at night to a sweet angel baby! (Knock on wood) AND as a bonus, Chris and I are getting much more sleep!

Let's hope it lasts!!

~Kathy

So Very Tired

Mr. Sam has decided that he not only rarely sleeps, he also enjoys screaming all afternoon/night. Let me explain...

Starting at about 3 weeks old, Sam started a bad habit of not falling asleep for good until midnight-2am consistently. Then he started staying awake longer, and longer, and LONGER during the day, but still wouldn't actually fall asleep until 12-2am. I mean, this kid has stayed TOTALLY awake from 6pm until 2am on multiple occasions, and this is AFTER having already been awake 90% of the day. THEN he started becoming fussy starting near sundown and lasting until 12-2am. He gets to the point where he won't stop fussing/crying unless you are walking with him. THEN he starting crying/screaming starting near sundown and lasting until 12-2am. When he is screaming, not even walking can console him.

I figured it was colic. Colic in itself is not fun. But recently, as this whole thing has slowly progressed, I decided he may have reflux. For one, when he spits up, he spits EVERYTHING up. He rarely dribbles...it's always ounces and ounces of fluid. After he spits up he seems IMMEDIATELY happier. Recently he has started whimpering while feeding, which makes me think it is hurting to eat. Also, he does not sleep long between feedings at night. I attribute this to it being painful to lay flat because of reflux.

Two days ago, Sam cried and screamed ALLLLLLL DAY. By midnight I thought I was going to go crazy. The doctor had a spot for us the next day, and agreed with me that it is probably a combination of colic and reflux. He gave us a prescription for Prevacid and he gave us a special formula to supplement his feedings with. He said it may take a couple of days to see any difference if there is going to be one. I sure freakin' hope there is going to be one!

~Kathy

Cardiologist's Report

We followed up with the cardiologist yesterday after our ER visit from earlier last week. I brought our O2 meter to show the cardiologist just how difficult it is to use. Not only could the nurse not get our meter to read a reasonable number, but neither of THEIR two 02 meters could get a good reading! But the Cardiologist said not to be as concerned with the o2 number and to look for other things like blue lips and blue gums.

After that, they ran an EKG and an echocardiogram. Both came out with wonderful results. The MD said the EKG looked nearly identical to the one they did right after he was born, which means that everything is staying very stable (no stretching or shrinking of any heart parts). With the echo, they saw that his pulmonary pressures looked great and also quite stable. The MD says he is nearly positive that based on the EKG and echo results, we will be able to skip any surgical intervention until the Glenn surgery (technically the second of the planned surgeries) which will happen between 3 and 6 months. All good news!

On another note, Sam is a beast. He weights 9.35lbs! obviously his heart is not affecting his appetite yet!

~Kathy