Well, once again this is a long overdue update. I wish I could say it's because all was well, but unfortunately that's not the case. This may jump around a bit so bare with me. I will also be copying and pasting some things from emails and posts on message boards for more accurate descriptions. Emma ended up doing well healing from her second operation from her button. It looks great. There is some granulation tissue we are dealing with but overall it's pretty "nice" looking. We're also loving the Mic-Key button. It's much much easier.
On a not so good note about 3 weeks post surgery she had LOST weight. She lost 1/2 lb from the time of her surgery. Not good considering she's on continuous feeds. Here's an excerpt from a post back then.
"Anyways, right now she's gettin 45 cc's (1 1/2 ounces) every hour for 20 hours at 20cal/oz. = 600 calories a day. We're bumping her to 60cc's/hr. = 40 oz./day = 800 calories day. Hopefully she can handle the increase of amount. If not we'll have to up her formula from 20 cal/oz. to 24 cal/oz. which would be a step backwards. Her ped is thinking we're looking more realistically until age 3 or so rather than age 2 to getting her tube out. She says even that given her history is optimistic. She is also getting a referral for OT. YAY. On a good note she can now say Mama, Dada, and Baba and knows what they means. So while she can't really sit and is nowhere near crawling we have one smart cookie!"
So we're a bit over a week from when I wrote that. She's now getting 50 cc's/hr. for 20 hours. We have had to slowly move her up as she was not tolerating the increased dose well at all. We have also laid off the solids since it was causing her reflux to flare up way too bad. With all that said she HAS gained 8 oz. (half pound) in a week. YAY! She got her referral for OT but I still need to make the appt.
Along with the weight gain issues Em is also having some muscle stiffness. Could be caused by poor positioning while in the nicu, or the fact that she was premature. There is conceren though that she has a mild form of cerebral palsy. She is very stiff, had clenched fists more than 50% of the time, has rather spastic movements, delayed motor skills, and g.i. problems, along with failure to thrive issues. All these lead to cerebral palsy. I understand a diagnosis won't change anything but it's alot to take in. I know if she has it that it is a mild form and she will benefit from the OT and PT but it's just one more thing. It's also one of those things that there is no telling why she got it. I know she's definitely high risk for a complicated pregnancy/delivery, along with being a micro preemie. It probably didn't help that she needed to be resucitated on 3 different occasions. ::sigh:: Oh well.
Now, for more good news. We FINALLY got her new pump. We're still waiting for the bags to go with it so we can't use it yet, but getting it is a huge accomplishment. Somebody else who has Kaiser asked me how I got it because they were dealing with some same issues as we were being denied it. For those of you wondering, here's how:
"Let's just say it took a LONG time and quite a few appeals to get one. I had a G.I. willing to work with me. They CAN get one and WILL get one if you bother them enough. Basically have your g.i. write a prescription stating exactly WHY you need a non-drip chamber pump. Errors, mobile child, etc. When I say exact, I mean EXACT. Then it goes to the DME. Then you need to call the DME over and over and over to make sure they send it to apria. Then apria will tell them they don't cover them, don't have them, and can't get them. The DME will NOT call you back. You wait a few days/weeks and then call the DME back. Then call Apria back, then DME again. They tell you no. You go through this process about 6 times. FINALLY, you get ahold of someone WAY high up at Apria who approves the "upgrade" and waives the upgrade fee. The GOOD new for you (and I should post this somewhere here and meant to) Apparently, I got through to the guy high up. Well, my G.I. did and they have now contracted with Zevex as of the beginning of January. Over the next month or so they will be phasing out the Kangaroo pumps and bringing in Enteralites. They will eventually get the infinities and phase out the regular enteralites as they get more infinities. Like I said this was a LONG process! You can fight like I did, or you can wait a month or so until the new pumps start arriving. I would call you contact at Apria and ask though. I know our area is starting to get them the end of this month. I got mine today, but it was special ordered! If you need help or specific questions I'll be able to answer them if possible."
So, that's about it for Emma. Lily is doing well. She's our little firecracker though! Caden is a handful as always but so much fun as well. We have another IEP meeting for him. We're also going to be starting OT and a social skills class for him as well. We're working on getting him into headstart from 12:30-4:00 p.m. mon-friday as well. Both for his sake and mine. He thrives on structure and interaction with other kids. We just have to find the right enviroment for HIM. Hopefully, things will start falling into place for him though. My health issues are getting better. I had a few medication modifications and my symptoms are quite a bit better. Still having some trouble but nowhere near how it was. I am able to function which is something I won't take for granted anymore.
One last update. The kids birthdays are all quickly approaching. Caden's 4th birthday is the 31st, then Emma's 1st follows 2 weeks later on Feb. 5th, and last but not least Lily will be turning 2, two weeks later on March 5th. We'll be busy for awhile. The next updates will most likely be birthday updates.