Last night after dinner the temperatures actually dropped below 90 and we were able to get out and enjoy our local park. The girls had fun in the Splash Pad and playing on the playground - and it was just nice to get out and see them having a good time. Every time we go anywhere like this - a place we've been coming to for years - our girls' entire lives - I wonder "Will we able to bring Macsen here? Will he ever ride that bouncy horse that both girls adored - the ride on helicopter, the jeep. Will I get to push him around the walking paths to see the ducks and turtles?" But then I realize that is thinking too far ahead and I need to force myself to stay in the now - with them laughing and giggling and begging to be pushed on the swings.
Friday, July 20, 2012
Friday, July 13, 2012
Hearts of Gold for Macsen
Tomorrow our friends here in Enterprise are collaborating with our gym we've been going to for 3 years now to host "Hearts of Gold for Macsen" a fitness based fundraiser to help us raise money for our impending move to Philadelphia for Macsen's birth. Here is the info :
Saturday July 14th at Gold's Gym Enterprise for Miracles for Macsen (Child Care available for donations). The schedule of events are as follows: 9:00 Spin with Jenny, 10:00 Zumba with Cindy, 10:45 Abs with Gilbert, 11:00 Body Sculpt with Gilbert, 12:00 Body Combat with John. There will be a 15 minute break in between classes (except abs and sculpt) so we can give away TONS of cool stuff! Hope to see you there! You do not need to be a member to attend, this is by donation only!
Saturday July 14th at Gold's Gym Enterprise for Miracles for Macsen (Child Care available for donations). The schedule of events are as follows: 9:00 Spin with Jenny, 10:00 Zumba with Cindy, 10:45 Abs with Gilbert, 11:00 Body Sculpt with Gilbert, 12:00 Body Combat with John. There will be a 15 minute break in between classes (except abs and sculpt) so we can give away TONS of cool stuff! Hope to see you there! You do not need to be a member to attend, this is by donation only!
No matter how many people show up I know everyone worked really hard putting this together for us and we are so grateful. Thank you especially to Cathie and John Ramiccio, Gold's Gym in Enterprise, Jenny, Cindy, Gilbert, Brittney, Alicia, Courtney and all the other sweet ladies in the nursery that my girls LOVE! We'll be there! And if you want a good laugh come out to see the super pregnant lady (me) kicking butt in Body Combat @12 :)
Tuesday, July 10, 2012
30 weeks down 10 to go
We had another echo with our favorite pediatric cardiologist yesterday. I love her so much. She and her tech Cindy are so positive I feel so good when I leave their office. They did get quiet when they were looking at his tricuspid valve - and I tensed up - but then "Not leaking" was the verdict. PHEW!!!!! everything else is about the same. She was able to see the pancake-like left ventricle but she said the super small size would actually be a good thing - you don't want a big void over there since he won't be able to use that side anyways.. He does have a VSD - Ventricular septal defect - or hole between the left and right side of his heart but she felt like this wouldn't really affect him in a bad way. The vessels going to his head/brain look good- not bulging with too much pressure. His tri valve is still strange looking and in a strange location but is functioning well and his heart is bigger than it should be.... we'll keep an eye on that.
Macsen was moving and rolling around like crazy - you wouldn't think they would know when they were getting scanned but they do. His heart rate goes up every time and he scoots around inside my belly like he's playing chase the baby.
The girls made the 4 hour trip with us this time. Their Aunt C watched them for us at the mall during our appt. They rode a train, jumped on those trampolines w/ the harnesses, rode on the coin operated mechanical mall toys, and got to put a quarter in the biggest gumball machine ever. Thank you Charlene!
On the way home I had to convince Aaron to bring us to the beach - if only for an hour. The girls played in the water and made friends with some older girls that had a cache of hermit crabs and minnows.
It was a really good day and I'm committed to making more days like that before Macsen's B-Day. I don't want the girls - or us - to look back on this summer as a time of dread and toil - dragging ourselves from one appointment to the next, holed up in our house waiting for the sky to fall. We have 6 weeks left here before we move up to PA for his birth and I want to wring every bit of normal out of them that I can.
Monday, July 9, 2012
A Day in the Life of the Miller Insurance Account...
Another appt in Pensacola today. Not too many left now. Alex starts week 30 today. Got me thinking...
I was doing some math (the easy kind, not that confounded New Math) and I came to realize what a racket all this insurance business really is. I totalled all of Alex's medical charges since January (first OB appt) through the end of June; 6 months of charges came to $21,293.91. Wow. Now the interesting part. The amount that was actually paid: $7,267.90. Almost a third! Combine that with the $600 in copays and out-of-network fees... $7900... we're still talking less than half!(37%) Ridiculous.
On the bright side, at least it's working in my favor for once. I can't imagine I'd be able to take that $1100 I've paid into insurance this year and use it to pay that $21,300 tab. And I'm sure the hospitals would be willing to let me slide by with just paying 37%... yeah right. The doctors and nurses are great (mostly). It's those bean counters you gotta watch out for!
I was doing some math (the easy kind, not that confounded New Math) and I came to realize what a racket all this insurance business really is. I totalled all of Alex's medical charges since January (first OB appt) through the end of June; 6 months of charges came to $21,293.91. Wow. Now the interesting part. The amount that was actually paid: $7,267.90. Almost a third! Combine that with the $600 in copays and out-of-network fees... $7900... we're still talking less than half!(37%) Ridiculous.
On the bright side, at least it's working in my favor for once. I can't imagine I'd be able to take that $1100 I've paid into insurance this year and use it to pay that $21,300 tab. And I'm sure the hospitals would be willing to let me slide by with just paying 37%... yeah right. The doctors and nurses are great (mostly). It's those bean counters you gotta watch out for!
Friday, July 6, 2012
Hard Decisions
Our regular OB appointment went well. Macsen weighs over 2 lbs which is average for his gestational age. Yay! Nice to have something be average :) Appointments to my OB are always bittersweet. It always brings back memories of my "normal" pregnancies with the girls - the excitement, expectation. Sitting beside parents who I imagine are blissfully unaware of the specific anatomy of their baby's heart - just like we were. Then comes the question - "What are you having?" while they watch my 2 girls twirling in the waiting room. "A boy." "Oh, you must be so excited!" "Well, yes but...." Sometimes I just leave it at that - other times I feel compelled to share the diagnosis about Macsen's heart. Probably TMI for most people - I just can't stop myself sometimes.
I was in what I can only call a "super blue all encompassing funk" last week - the kind that makes you want to crawl in bed and sleep away reality for as long as your active kids will allow. It was after we got back from Atlanta. I couldn't figure it out. We hadn't gotten any new information, not really. The surgeon seems great, the facilities state of the art. I kept telling myself to stay positive - to have faith. Finally Aaron and I talked and when I asked him what he thought about Atlanta he said "I really like them and I think if Macsen just had straightforward HLHS we would definitely have him there. But I don't feel like it's the place for him. I think we have to go to CHOP."
WHOOSH!
The weight lifted, the clouds parted, birds began singing - however you want to say it I felt such RELIEF! I so wanted Atlanta to work - it's 4 hours away, the girls could probably stay in our own home, Carys could start Kindergarten here with friends she's grown up with, we could probably bring Macsen home between surgery #1 and #2, Aaron would always be a few hours away. It just makes more sense. But no matter how much I tried to reason with myself it just wasn't the "right" decision - not for Macsen, and not for us. Whatever comes, whatever happens to Macsen after birth - I know I have to be able to say with 100% certainty that we did everything we could to help him. The what ifs would kill me.
So, as of now we're going to CHOP to deliver. I want to keep the girls with me - I don't feel it would be better to add a huge separation on top of all the other upheavals we're going to go through. I'm looking into homeschooling Carys since I don't know how long we'll be there. Could be only weeks if he doesn't make it, could be a couple of months if he does really well, or many months if it's a struggle. Who can say. We'll try to stay in Philadelphia to make it all simpler. We'll do as many fundraisers as we can - and as many as our friends can stand - so Aaron can stay with us as long as possible - definitely for the move up there and the waiting to go into labor. I'm terrified he would miss it and it would be too late when he got there :( and for the first surgery and recovery part. After that it's all a "wait and see" sort of situation. Can't plan too far - it's pointless.
Monday is another appointment with the cardiologist in Pensacola for another fetal echo. Lets hope his valve continues to hold and nothing else has gotten worse since his last echo 3 weeks ago.
I was in what I can only call a "super blue all encompassing funk" last week - the kind that makes you want to crawl in bed and sleep away reality for as long as your active kids will allow. It was after we got back from Atlanta. I couldn't figure it out. We hadn't gotten any new information, not really. The surgeon seems great, the facilities state of the art. I kept telling myself to stay positive - to have faith. Finally Aaron and I talked and when I asked him what he thought about Atlanta he said "I really like them and I think if Macsen just had straightforward HLHS we would definitely have him there. But I don't feel like it's the place for him. I think we have to go to CHOP."
WHOOSH!
The weight lifted, the clouds parted, birds began singing - however you want to say it I felt such RELIEF! I so wanted Atlanta to work - it's 4 hours away, the girls could probably stay in our own home, Carys could start Kindergarten here with friends she's grown up with, we could probably bring Macsen home between surgery #1 and #2, Aaron would always be a few hours away. It just makes more sense. But no matter how much I tried to reason with myself it just wasn't the "right" decision - not for Macsen, and not for us. Whatever comes, whatever happens to Macsen after birth - I know I have to be able to say with 100% certainty that we did everything we could to help him. The what ifs would kill me.
So, as of now we're going to CHOP to deliver. I want to keep the girls with me - I don't feel it would be better to add a huge separation on top of all the other upheavals we're going to go through. I'm looking into homeschooling Carys since I don't know how long we'll be there. Could be only weeks if he doesn't make it, could be a couple of months if he does really well, or many months if it's a struggle. Who can say. We'll try to stay in Philadelphia to make it all simpler. We'll do as many fundraisers as we can - and as many as our friends can stand - so Aaron can stay with us as long as possible - definitely for the move up there and the waiting to go into labor. I'm terrified he would miss it and it would be too late when he got there :( and for the first surgery and recovery part. After that it's all a "wait and see" sort of situation. Can't plan too far - it's pointless.
Monday is another appointment with the cardiologist in Pensacola for another fetal echo. Lets hope his valve continues to hold and nothing else has gotten worse since his last echo 3 weeks ago.
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