Wednesday, August 26, 2009

Good, Bad, Ugly, Amazing

Yes, I'm sorry. It's been too long since the last posting but it's been busy, and by the end of the day I've got just enough time and energy to FarmVille, YoVille, Fairyland and post on my favorite boards before I crash for the night. Or at least until 1am when I get up to fill the boys' feeding pumps. Anyway, here's what we've been up to.

The Good

We've been so incredibly busy this month and next month is going to be even busier. We started off with ending our summer session of Rollie Pollies. We loved it so much we signed up for another 9 weeks and have taken to playing Rollie Pollies at home.

We spent the day at one of the county fairs with our local Preemie buddies Brendan, Marino and Simon. Unfortunately we spent a lot of time sitting in traffic and didn't get there on time so we only got to see a few animals, but what we did see was fun. And it was cool to hang out with Mom's who get it, all of it. It's really nice to have that support locally as well as nationally. Next month we're going to do another get together at the DC zoo and this time we're going to have our friends MHop and her daughter Campbell join us all the way from SC!

Dear god Mom! That smells worse than Bridget!

It's been super hot with lots of big thunderstorms at night so we've been spending time in our personal lagoon trying to cool off.

Pool Time with the Puppies Chewie and Bridget!

We also had our very first large group meet & greet at Uncle Tim and Auntie Te's wedding shower. The boys have never met so many people all at once and it was during their big nap time which had us nervous things wouldn't go so well. Surprisingly the boys did amazing and really tolerated all the attention very well. Even Auntie Jenny and Auntie Te got to hold the boys a couple of times which was a life saver for me. Yay for Aunties who like to snuggle babies!!

The Bad
The boys have been having some issues with their poop lately. They are once a day kind of guys and have never really had much diarrhea before so when the really runny stuff was still happening several times a day for three weeks I decided enough was enough and took the boys to the pediatrician last Monday to discuss what could be causing this to happen.

The pediatrician said that diarrhea has nothing to do with teething six teeth at the same time, which both babies are doing.(Oh Joy!) Because they are tube fed almost continuously on a very elemental formula called Neocate at a very high calorie content (30 k/cal compared to standard baby formula of 20k/cal) the pediatrician thinks this is just their bodies saying they've grown and need to get on to three or four bolus feedings a day and off the continuous overnight feedings. The problem with this is that they have been doing very badly with their bolus feedings and even worse eating by mouth. They vomit about one to six times a day each, averaging about two vomits a day. This is great compared to the 20 times a day from before. We have to push the boys harder to tolerate more volume over a shorter time so that it will stretch out their stomachs and hopefully they'll just get used to eating that way and get off the over night feedings. I hope this works because it would be heaven to not have to get up to feed the feeding pumps at 10pm, 1am, and 5am.

While we were at the pediatrician she said that they happened to have the flu shots in and that day and wanted to give the boys their flu shots so they wouldn't have to get them in addition to all their 18mos vaccination shots. That night after the boys went to bed, Evan woke up with a fever of 102.5 and the week of misery began. Two days later Cameron came down with the same fever. Teething with a high fever = Daddy stays home from work and we all try to entertain the cantankerous babies. I let them watch Elmo pretty much all day for two days straight while laying in big fluffy pillows on the couch because that's the only thing that they wanted to do.

The Ugly
By Thursday Evan's fevers had subsided and he developed a funny rash that looked a lot like heat rash. It's not uncommon for the babies to get heat rash often, especially recently since it's been so hot and muggy outside, but this was much worse and all over their arms, legs, hands, feet, face and shoulders. By Saturday Evan's rash was gone but Cameron got the rash which lasted until Tuesday (yesterday). The doctor said that it had absolutely nothing to do with getting the flu shot and that it was probably a virus the boys caught while in her office that day and was maybe Roseola (sp?) or a variation of what my mom calls the German Measles. I canceled all of our appointments and therapy sessions for the rest of the week because all the people we do therapy with have other patients who have fragile immune systems and I don't want to be "that parent" who lets this kind of thing pass on to the next kid, because I know exactly what it can do to and don't wish that on anyone.

Here's what Evan's rash looked like, Cameron's looked exactly the same but more on his face.

Here's Daddy entertaining babies, and himself.

During this whole week the boys have been miserable, cranky, drool mongers and sleeping horribly, worse than usual. And they still have excessively watery poops which is now starting to give us our very first cases of "bad" diaper rash. Fun times. Another horrible outcome from all of this is that the guys suddenly don't want their pacifiers anymore. They just spit them out or shake their heads to avoid when we offer it to them. It's both a horrible thing for us and good thing that they suddenly don't want them. Most parents would say, great! Now I don't have to "give them to the Paci Fairy to give other babies who need them". But for us, the pacifier is a special tool we use to help the boys maintain the ability to suck and keep something in their mouths for long periods of time, something that they until now didn't find offensive and that worked to help sooth their gag reflex and to let us know when they've had enough or too much oral stimulation during therapy sessions. With the comfort from the paci's gone I have no idea how feeding clinic and OT sessions will go. And because of all of this the boys have also taken huge steps backwards with refusing to eat anything by mouth at all. They just want to teeth on things and will not touch any food unless it's to smear it all over the table and throw it on the floor. The dogs have been enjoying that new game a great deal.

The Amazing
Despite feeling like crap from teething and getting really sick the boys have continued their motor development explosion. Cameron is crawling all over the place, can sit or stand without holding on to anything, has crawled through tunnels but usually gets stuck because he decides halfway through that he wants to sit up and can't figure out why this doesn't work. The biggest news for Cameron is that he's taken five steps all by himself without holding on to anything. It was a beautiful moment and he was laughing and giggling at me the whole time.

Evan has been a total copy cat and wants to do everything that Cameron does and go everywhere he goes and gets irate and hysterical if his brother gets more than ten feet away from him. This is great because it makes Evan lean forward and crawl to try to keep up. But he can't really crawl because he's weak on one side so he scoots with one foot and drags the opposite knee. He doesn't get very far very fast yet, but it's a matter of time. And he's pulling up on anything he can get his little hands on, using his forehead as a fifth appendage for pulling up. And he's taken to biting pretty hard, often bruising and pinching, but only when he's excited and his mouth happens to be pressed against my shoulder. It hurts!!! Hopefully he'll grow out of that phase quickly. The biggest news for Evan is not only is he crawling, but he's started freestanding for longer periods of time, and today he took two steps with his right foot. It became more of a pivot, but they count as steps since I think that was his intention and he kept his balance.

It's so exciting to see them moving around. It's the best feeling in the world to know your child will not be stationary forever, that the 50% chance of not gaining their gross motor skills the neonatologists gave them before they were born was completely wrong. That they are beating the odds again and again and again.


Ivory said...

Amazing doesn't even begin to describe them. STEPS?? Both of them!! Awesome!!

Jennifer said...

The amazing part is amazing! As for diahrea, Amelia gets it every time she gets a tooth. Even thought that might not be the case with your boys, gosh peds don't know jack.