Tuesday, April 14, 2009

It begins...

Appointments. I got my first series of appointments lined up yesterday. I didn't receive my preliminary amniocentesis results so I should get those sometime today. Anyway, in two weeks, I have my first genetic counseling meeting, a follow up with the maternal diagnostic/best head doctor ever..Dr. Silver, and then I walk over to primary children's hospital for my 1st (or rather Ireland's 1st) echo cardiogram. From what the scheduler/secretary told me, my next ultrasound will most likely be about two weeks after that, in addition to meeting with Dr. Silver and discussing results of the tests that I'll have in these next two weeks. whew, good thing I got that notebook.
Mikey and I talked about different hospitals yesterday because a few are considered leading in the CDH world. Well, for anyone that's worried, I did some research and once I ask a few questions at my next appointment, I'm pretty certain that we're sticking with the UofU/Primary Children's. If by chance, we don't get some answers that we agree with, then we've got Uof Denver and Children's Hosp of Pennsylvania on the table...insurance pending but from what I've learned, don't think that would be an issue with blue cross/blue shield. ....Anyway, in my research, I found at least one geneticist that has done major research on CDH and two of the pediatric surgeons that have also done research on how to fix the hole in the diaphragm (plus they had astounding results). Also, I found a few other names of UofU personnel, I just couldn't figure out what departments they were in....In addition to researching the doctors, I found UofU on the CHERUBS site of hospitals connected with the research and understanding of CDH...there were only 12 hospitals listed. I've learned that UofU also has the ventilation systems and ECMO (extracorporeal membrane oxygenation...machine that gives blood the oxygen it needs if ventilation doesn't work) that is commonly needed by babies with CDH. Just to let ya know, ECMO is a last resort that we hope is not needed but is important to have because so many hospitals do not have the equipment and it's also needed if Ireland is having a tough time and needs to rest while her lungs have time to heal with this machine.
Well, we made a hard decision yesterday. Mikey had to cancel our summer vacation. It really sucks because the timeshare was won at a Christmas party and we were actually given extra days. But fact is, we need to save the money that would be spent on a 7 night vacation. ...hopefully, we can throw in at least one long weekend somewhere because I don't like the thought of not having a vacation with Tristan this summer...usually, he's off with his dad and this year he opted to stay home and just have a few weeks spent with his dad in Texas. ...oh well, we'll figure something out and enjoy this summer.
As for today...which for those that don't know, I am recently unemployed...but alas, this is not the worst news. Now is a good time for it, I'm still working a few hours a week, and I probably don't need to be working a full schedule. Anyway, I promised Mikey that I'd make some blankets for Ireland. I think Mikey's been a tad worried since I haven't made anything or shopped for anything for this dream of a girl, but I'm getting there. I figure I'll go to the fabric shop today and find a few prints that I like and just make a few simple blankets. I actually want to do my first simple chenille blanket. The stuff is so incredibly soft and I think Ireland will be able to at least use my blankets in the hospital. I'll definitely have to ask for tips because I hear working with chenille can be a pain.
For those of you that were bored by that last paragraph, sorry.... I just finished a yummy bowl of oatmeal with raisins, brown sugar and butter...mmmm. Don't eat like this each morning but it really sounded good. ....and just to add a side note, I got the best text message from my brother, Phil, yesterday. He said the simplest of things and I needed it at that moment.
Hoping for a productive day, no snow tomorrow, and that everyone has a good day.

1 comment:

  1. Chanda and Mike,

    So glad to hear things are going good so far. You are definetly thought of, spoken about and prayed for around here! I am so happy about this blog. You can be sure, I am checking it all the time...NO, I'M NOT NOSEY!!! JUST CONCERNED!!!! Wish we could live a little (well, alot) closer so we could visit. Take care, love shonna