Made of Gray

Houston......we have a Totally different baby!

Raising the Rare ChildHolly D Gray3 Comments

Time restraints for blogging have been very restricted. If were not sleeping were watching Caleigh breathe while she sleeps. Plus all of her daily cares which leaves us with no computer time. So, please bare with me loyal readers.....

Ok, so on to those stories and news I promised so many days ago.....

The biggest news of all:

When I say different, I mean TOTALLY different! Caleigh is almost sleeping through the night and she is so much happier! So much so, that the third day we were in the hospital Caleigh started cooing at us. See the amazing video below! Almost 8 mths of nothing but cries, lessen the seizures and we have a happier, more content baby. We couldn't be more excited about her progress.

Our wild trip to the hospital came to an end exactly one week after it began. Which believe me was long enough for all of us. As I said above Caleigh's seizure medicine,

Phenobarbital, seems to be working wonderfully. We take Caleigh back to the doctor for another

EEG on the 24th of this month to see if the medicine is working. As far as demeanor, Caleigh seems like a totally different baby. Different cry, different posture, different behavior......Different, but in an amazing way. She acts like she feels so much better. Sleeping like a champ and catching up on all that rest she had lost in the last 7.5 mths. Content not being held 24/7 and enjoying her toys, swing, and bouncy seat. Were just amazed and that's the only way to describe it.

Here's Caleigh getting her first EEG

Here's Caleigh in her hospital bed......sleeping without being held!

About those seizures... The docs seem to think that Caleigh is having Complex Partial Seizures. You can read the link about the kind of seizure, but in a nut shell, we can't tell if she is having one. Typical symptoms include: staring, repetitive motions, saying the same word(s) over and over, and losing consciousness. These are all very hard to tell in a baby. During our research, we learned that a person can have 200-300 of these electrical malfunctions a day. During her 30 minute EEG Caleigh had 3 seizures and they were firing from two different sections of her brain. So this explains a lot of Caleigh's behavioral issues.

Caleigh was on Phenobarbital almost since birth until the end of January. A side effect of Phenobarb is lowering liver bilirubin levels. Once she was taking in enough formula, they were able to take her off the low dose of Phenobarb and start Ursodiol for liver purposes. Phenobarb builds up in the bodies system and tissues. Which to us explains why daily life with Caleigh was just getting harder and harder. The Phenobarb was slowly getting out of her system and the seizures were taking over, full strength. Caleigh still gets upset with tummy pain, but we can actually tell that it is stomach aches now. She hasn't hyperventilated since the day before we went into the hospital. We're just happy that another piece of the puzzle is down on the table and now we can monitor it too.

What's this.....oxygen....at home? Yep, little miss just didn't want to give up her oxygen at the hospital. We're on 1/8 a liter continuous except for bath time. It's just a whiff of oxygen, but when your getting over a cold and your lungs are teeny tiny, you need the whiff. Caleigh has an appointment with her lung doctor on May 5th and then we will re-evaluate the situation and see if she still needs her beautiful, new necklace...no headband.....no earrings...... Whatever it is, it's definitely a fashion statement!

Grabbing Daddy's Beard

Eric and I brought home a blood pressure machine. We take Caleigh's BP at noon and midnight and then give her Enalapril. She was on this med in the NICU so we asked that she be put back on it instead of searching for the perfect BP med again. We now have an Nephrologist, which is a kidney doctor. Caleigh has an appointment with him in two weeks. I think with the seizures under control Caleigh's blood pressure and heart rate have been a lot better, but she is still requiring the medicine.

We got an apnea monitor that we hook Caleigh up to every night that watches her breathing and heart rate, and I'm happy to report that it hasn't gone off once since we have been home. Super!

The oxygen tank, IV pole with three pumps and three bags all attached to tiny Caleigh makes it really hard to get around the house (especially on carpet). I complained about her not being very mobile before, but this is just ridiculous. How many hands does a mom need? Right now I think 6 would do just fine.......

Our first trip outside, and around the block, after we got home from the hospital.

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