H1N1 here we come!

So it would seem that Anna has a case of the swine flu. She has been tired for a couple of days and last night she complained of her legs and arm being "achy". I took her temp last night and it was 101.3 so we started in with the ibuprofen and tylenol to try and keep her comfy. I got up last night to make sure she didn't miss a dose and by this morning she looked fine. I thought maybe I had been a little too quick to call it the flu, but as the day goes on I can see I was right the first time. As the morning progressed she went from perky and happy to tired and wiped out. By the time I took her temp at 10:45 it was up to 103.3 and it hasn't gotten below 101.2 since then. Poor kiddo. Right now we're alternating Ibuprofen and Tylenol every 3 hours and she's drinking really well, so there's nothing else we can really do right now. I guess we'll just start watching movies and see how many we get through by the time we've passed it around to everyone! I'm keeping my fingers crossed that the twins don't get it, or if they do that it is at least after Vivi's surgery next Tuesday for her ear tubes. I've been so anxious to have this surgery over with that it would be pretty hard to take if we had to postpone it.

7 months!

I thought that I should at least post a couple pictures of Vivi and Lizzi since it IS their birthday today. And I still do not have a baby book for either of them. I keep telling myself that it is because we are now digital people and I will put together a photobook for each of them that will include only pertinent information and (this is the really genius part) it won't have any blank spaces to make me feel bad for not filling in such important information as "Who watched the first time you rode a carousel". However, this plan will only work if I actually get going and do it and so far, well, the guilt's still here. But I digress, these are pictures from today, September 23, 2009, and they pretty much capture what they're like right now.

Elizabeth, in the top two photos, has her tongue out all the time now. She has 2 teeth coming in now so we're hoping that accounts for the weird tongue behavior. Or that at a minimum she will stop by the time she gets to high school. She is crawling all over now and, if not closely supervised, will head off on little expeditions to see what goodies she can find on the floor. Lucky for her the older girls like to leave treasures lying all over the house so she can always count on something new and interesting to shove in her mouth. And if all else fails she likes to pick up clumps of dog hair (yes, I'm admitting we have them floating freely about) and try to eat them. She's a smart one, that Lizzie :)

And Vivian, in the bottom two photos, has really started to fill out. Her cheeks are getting chubby and she is developing little fat rolls on her thighs etc- yea! Please try to look past the spit up draining out of her nose in the top photo. I was trying to capture her newest trick- mini push-ups! She just started doing them within the last couple of days and it is a major improvement. Before whenever she was on her belly she would put her arms behind her and lift her legs off the ground so that she looked like she was flying. She still does that plenty, but at least now we know it's not permanent ;)

Someone sent this to me today and though I've read it before, it was always pre-kids. I know we are very lucky that Vivian seems to have a very mild form of 22q11 deletion (what we've been calling DiGeorge's or VCF), but it's still there. And it will always be there. And the worry will always be there. I don't think there's any way that we can know that she is missing part of a chromosome and ever get used to it. Right now I feel like I am constantly waiting for the other shoe to drop and I suspect that feeling, while it might lessen, will never really go away. So if you wonder what life is like with Vivian, I'd say this about sums it up.

©1987 by Emily Perl Kingsley. All rights reserved. Article printed with permission of the author.

I am often asked to describe the experience of raising a child with disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away...because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Overheard today while Lucia and Darby were having lunch together:

Darby: We took the babies to the doctor today. And me!

Lucia: Did you get shots?!

Darby: Yep! Right here (shows her 1 band-aid)

Lucia: Did you cry?

Darby: Yep! But only a wittle bit!

Lucia: Good job Darby!

There was more, but my memory is so terrible I can't remember what they said right now :( Hopefully it will come back to me soon! When it was going on it was adorable; they looked like two old friends catching up after a long time apart. Maybe that's how it feels to them when Lucia has preschool- like a really long time to be away from each other...

A conversation with Darby last week.

Me: Dar-by. Wake up sweetie. Time to get up. It's almost time for dinner.
Darby: I don't wanna get up. Is it morning?
Me: No, but nap time is over. If you don't get up you won't be able to sleep tonight.
Darby: Momma my head doesn't feel good!
Me: Oh really? What's wrong with your head?
Darby: It neeeeeds more sleeeeeeeeeeeeep!

I had a great conversation with Anna last week. Before I tell you what she said, though, you need to know a little background information.

1. We were talking on the phone while she was in Orlando and I was here in Northfield.
2. She was there because Kyle's parents took the 3 older girls to Disney World for 4 days.
3. While packing I had told her she couldn't bring her dress-up clothes because "it would be too warm in Florida for her long, hot dresses" but what I really didn't want was for her to wear them and feel bad that her homemade dresses weren't as pretty as the expensive dresses that some of the other girls would be wearing.

Anna: "Oh, and mom? I have seen 22- No, 23, girls wearing those dresses and they don't look hot. They look fine."
Me: "Oh, really?"
Anna: "Yes. They don't look hot at all. They look fine."

Tomorrow's The Big Day!

ok, I'm way too scattetered right now for much, but here's what's up.

Vivian has Tetrology of Fallot and the repair is tomorrow at 8 am. We will be leaving Northfield at about 5:30 to get her there at 6:30, then surgery at 8. It should take about 4 hours and then 7-10 days in the hospital. We're going to spend the first night with her and then probably commute for a few days depending on when she is awake and able to breastfeed again. As soon as she is able to feed normally I'll be staying at the hospital and Elizabeth will stay with me.

Thanks so much to everyone who has already written/called to say they are thinking of us! I'm kind of a hormonal mess anyway, but all your kind words have touched me so much that I am teary several times a day. (the funny part is that I keep rereading the messages and crying all over again! I'm loony, I know!) Anyhoo, keep up the good vibes for a little while longer and I will try to keep you updated as often as time allows.

Good news- she's growing!

Just a quick update after our visit with the Nurse Practitioner today. We weighed Vivian as soon as we got there and were very happy to see that she is up to 8# 13 oz.! Good news for the little peanut as it means she is no longer falling off her growth curve, but has popped back up to about the 10th percentile. She watched her eat, too, and was happy with how she is getting the milk into her body (she paces herself well so she doesn't get out of breath, has good coordination regarding her suck/swallow pattern) so it seems that her slow weight gain was probably a result of her body using the calories faster than it could take them in. She'll keep getting the bottles for now, and we're going to keep doing weekly weight checks to be sure, but my fingers are crossed that this is one issue that we can mark as resolved. I am also hoping to be able to go back to exclusively breastfeeding after her surgery when she should stop burning through calories so quickly. Lucky for her (and me!) having Elizabeth continue to nurse while Vivian gets a little help should make it easier to go back than if she were a single baby.

Some recent photos

Darby , Anna and Lucia having a tea party with real raspberry tea for lunch about 3 weeks ago
















Elizabeth sleeping yesterday (4/27/09)














And Vivian giving one of her best smiles last week (4/24/09)

I'm beginning to wonder how she could be my daughter...

Vivian can't seem to gain weight very easily, which leads me to wonder if she's really mine. For two consecutive weeks she has gained only 1.5 ounces for a total of (drum roll here) 3 ounces in the last 2 weeks. You're amazed at my mathematical prowess, I know. That is, to say the least, significantly lower than what she should be gaining. She had been growing somewhat steadily along the 10th percentile, but has now dropped to between the 3rd and 5th percentile. Now we need to figure out why and how to help her put on some weight. There are a couple of possible reasons why she might be lagging behind. 1: her little heart is working so hard to get oxygen around her body that it is using up all the calories she's taking in and not leaving any for growth and 2: her soft palate is making it hard for her to eat and she's not taking in as many calories as she should be. Click here for a link to a better explanation of the palate problem http://craniofacial.seattlechildrens.org/conditions_treated/velophar.asp

Whatever the reason we need to figure it out so she can be strong for her surgery in 2 1/2 weeks. So off to Children's we go! We have an appointment tomorrow with the nurse practitioner who has been tracking her weight gain so that she can watch her eat and get a better idea of which problem to work on first.

We also will be seeing a gastroenterologist on Thursday to take a closer look at her reflux and see if we can make her more comfortable/ stop the wheezing that happens when her reflux causes her airway to close off. Hopefully both of those appointments will give good results. For now, we have added 2 bottles a day of 24 calorie per ounce formula (normal is 20/ounce) to give her a little boost and see if we can help her gain a little.

I also want to brag that Anna and Lucia brought me breakfast in bed on Saturday. Anna made it and Lucia put it on a tray and brought it up to me. The best part was that I came downstairs before they brought it to me, so they asked me to go back up and eat it in bed. It was delicious! I got a nutri-grain bar, some dried apricots and a handful of mini marshmallows. They told me that they wanted to bring me cereal, but since I have given up dairy they had to find something else. What thoughtful girls! So, I guess mother's day came early for me this year :)

News About Surgery

Ok, so I'm going to try this blog thing again. Hopefully at least one person other than myself will find it entertaining, but if I'm the only one laughing at my jokes, well let's just say it wouldn't be the first time! And since Kyle's poor memory seems o be contagious maybe this will help me when I'm old and grey to pretend like I remember something about raising our kids.

We are 8weeks and 1 day into our lives as a family of seven and wow has it been an emotional roller coaster. Right now I am too tired to be witty, but I hope that if you keep reading this that in the coming weeks and months I might be able to produce brief but impressive flashes of wittiness for your enjoyment.

When last I wrote a mass email V's weight gain had picked up and things were looking good. Since then her weight has been all over the map (4 oz over 10 days, 6 oz in a week) with last weeks gain being a very disappointing 1.5 oz. We also met with her cardiologist last week who informed us that her heart condition has progressed more quickly than they had expected and her surgery needs to be moved up. She is now scheduled for open heart surgery on May 14th at 8:00 am. I'm a wreck. Even more than usual. So please keep us in your thoughts and prayers as we get closer to her big day. We're trying to focus on the aftermath right now, with great hope that once the surgery is done she will grow more quickly and have more energy for interacting with us. She was the more active baby while in utero, so it will be interesting to see how fixing her heart affects her personality.

That's all for tonight, I need to get some sleep. Check back for more updates on all of the girls. In a house with this many women there is bound to be drama!