Wednesday

Woke up from a dead sleep this morning to Ella screaming for me. Which I can't complain about as it was already 7:40 and Ava was still sleeping. But really it's nicer on days off from work to get up with Ava at 6:30 or so and then get to go back to bed for an hour before Ella wakes up. So maybe it was because my routine was ruined that I felt so lousy this morning. I fed both kids and drank my spinach and just couldn't seem to wake up. I went back upstairs with Ava and tried to get her to snuggle with me while Zar tried to con Ella into watching an hour of Sesame Street on her own so I could snooze. None of it was working. Snuggling with Ava was like snuggling with a sack full of puppies and Ella, as soon as dad left, stood at the bottom of the stairs screaming "MOM! MOM!" So I said "OKAY! LET'S GET UP! WE'RE GOING!"
So we went to Liberty Park so Ella could play in the Seven Canyons water fountain. A photo at this point would be great, but I couldn't possibly take any pictures while holding a squirming Ava and monitoring Ella for drowning. By the end of day she had figured out that when you fall down, you can just stand up and save yourself instead of flailing and screaming and drawing the attention of every mother there while your large pregnant mom (who had forgotten to put on make up) stumbles into the water clutching an infant to yank you up by the arm.

When Ava fell asleep Ella enjoyed some apples dipped in yogurt...notice bilateral bloody knees from running from above mentioned pregnant mother just to be funny.
We were there for more than three hours and Ella led us from the fountains to the merry-go-round to the Folk Art Museum (pleasing wheelchair access ramp to run up and down) and back to the fountain to splash with various 3 year old boys...and blatantly flirt with a dad or two...
By the time we left Ella could barely stand and her lips were blue, but here is my concern. Other than a very brief ten minute snooze in the car on the way home, and despite me letting her lay on the couch watching "Minnie", she is not taking her daily nap. This mostly concerns me as she also skipped her nap on Monday. This is not the time in MY life for her to give up her daily nap.


Ava, on the other hand, after demanding that she be held at all times once we arrived home, passed out on the carpet when I sat her down momentarily to rescue Ella from some danger, and there she shall stay.

And the real reason I'm blogging about nothing today, is that it is nearly 5 and I realized 30 minutes ago I had made no dinner preparations, and don't want to. So if I keep busy with other things like blogging and a no-nap toddler, Zar will have to pick himself up some take-out to eat during his much anticipated LOST marathon (season 6 came out yesterday). Plus I'm on call so really should be relaxing as much possible in case I get called in at midnight. So that's how it's gonna be.

Lily's First Cardiology Appointment

This picture is like 5 weeks old.

Busy fetus day.

I had another ultrasound this morning and again, not much to report. Lily weighs about 3 lbs 3 oz when she should be closer to 4 lbs, if she were typical and all that. I told him Charlotte was only 6 lbs 5 oz and Ella was 8 lbs 4, so no big surprise, and he said he would be surprised if she gets as big as Boofus was. But then they also estimated Boof would be between 3 and 4 lbs so whatever, really.

Lily still has a good round head shape so we are excited to hopefully avoid crainiosynostosis surgery. We are also excited about it because Charlotte made huge strides immediately after her skull surgery which wasn't until 8 months. Maybe Lily can get a "head start" on her development if her brain isn't squished.

Oh yes, she already has a lot of hair. But that's totally typical for us.

So you may notice that through this post I have assumed Lily will be born alive and and live for awhile. It's hard not to make that assumption with how she looks on ultrasound, compared to Charlotte. I have tried to not make this assumption but at this point that's where I am. I don't want to get too hopeful, and here I want to be very clear that I am not thinking there is any chance Lily will be born with no issues and be one of those crazy miracles you read about. I will be so, so thrilled if she is as sweet and darling and wonderful as Charlotte...and I would consider it a huge miracle if she didn't require 24 hour a day oxygen. What an incredible blessing that would be.

Over the weekend we went to a SOFT (support organization for trisomy) BBQ and got to talk to Dr. Carey who is the world authority on Trisomy 13 and 18 and happens to live and work right here. There was a family from Uruguay at the picnic who had traveled across the world to meet him and talk about getting some treatment for their grandson with T13 who is nearly 2.

Anyway, he asked if we had done a fetal echocardiogram which we had previously refused actuallybecause we were taking such a wait and see, no heroic measures point of view. The thing about hanging out with these great trisomy families and docs is the attitude is so different. These kids actually have worth and deserve care which isn't what you find in a lot of medical communities....

So that got me thinking.

So Dr. Carey called me yesterday and asked about the echo, which I said I had been reconsidering, mostly to just "get in the system" and not have to do a lot of blind calling for appointments after she is born. So today he went and talked to cardiology who called me and set up an appointment for the echo today at 1:30. Sheesh! Never got into cardiology that quickly in the past.

I had a 45 minute scan which was rather uncomfortable what with the whole flat on my back, no blood to my brain aspect, and then the docs came in to tell us that really, they don't see anything abnormal. We won't know about the pulmonary hypertension until after she is born and her lungs inflate, but if she has the hypertension, we will treat immediately (with oxygen and meds) instead of waiting until she loses consciousness and is rushed to the ER via ambulance. Which may make a difference in how severe it becomes.

YIKES. Suddenly I'm making plans and assumptions I had promised not to, and as much as I know Lily won't be with us on earth forever, I'm think I'm going to have a rude awakening if she is born and something we haven't evaluated takes her immediately. So tomorrow I'm back to holding my heart close, just in case.

I went to the OB today. Really nothing to report, except I have to go back in two weeks. TWO WEEKS!? This being my third go-round, you would think I wouldn't be shocked, but I thought I had at least another month before I started my more frequent visits. And this being my third go-round, I almost feel like I should get a free pass to skip a few appointments. I mean, my cervix DOES NOT open, my blood pressure stays constant, I don't start peeing protein. Yes, my weight will keep multiplying and that's going to be about it. If I start getting puffy or stop getting kicked in the bladder every three seconds, I'll call, okay? Just kidding. I will go every two weeks. And then every week. And two months from TODAY, we can discuss my scheduled C-section. I can set it up for anytime after October 16th. Crazy.
I'm still not thinking about the future too much, and just plowing on ahead and letting life take me where I'm going to go anyway. I am concerned about not having a car big enough to hold all of us, and wondering if Zar is going to have to run out and buy a van so Lily and I can be discharged legally, but beyond that I have no plans, expectations, or "feelings" about what is going to happen. Which was the same with Charlotte. If there is something I need to know, I know God will let me know as He has a hundred times before. Oh I am keeping the preemie sized jamies out, and pulling out my nursing supplies when I come across them, but that's it. I have another ultrasound next week and that will probably be our last peek before the big day.

Having the annual Newport trip over is strange, as it's leaving me wondering what next year could look like. We went from one baby beach girl last year to FOUR this year, and next year could be five, or more, or back to four, and Ava could be walking! Remember when the years seemed soooo long and yet nothing seemed to change from one to the next? Like when you were like eight?
When did I become 30? (close enough. I'm owning it.)

Back from the Beach

Ava and her twin cousins Rosie and Evie...or maybe it's Evie and Rosie...

Strange Amazing Life

Stevie, Ava and Chloe

You know, sometimes I'm just amazed at everything I have gotten to be a part of, and it's all been because of my amazing kids. And I'm also amazed at this day and age when it's so easy to find others who are sharing your similar journey, and become friends and support network.
I met amazing Becky years ago when she emailed me after reading something I wrote about Charlotte on Benotafraid.net, a site about carrying to term after a poor prenatal diagnosis. She could tell I was LDS, (Quorum, who else says that?) and we talked about our kids through email and such for years across country, until I finally met her and Ben, just days after Charlotte had passed away. It was an incredible blessing.
And then Benny passed away earlier this year, and I found out online, and sat and cried on the stairs and wished I could be there for her as she was for me. Becky just came out with her amazing daughter Stevie to deliver a small gift--A VAN--to another special needs family who needs it.
She invited me to a little lunch get together yesterday at April's house, and it was an incredibly special afternoon. I got to meet all these amazing moms and their kids, all of whom I had at least heard of and thought of as celebrities but had never met. It was Amazing.
Becky and I were the only ones who had lost our special kids, and we sat and talked about that inevitable and strange journey, and about all the other things moms without special needs kids don't generally discuss daily, and it was incredibly uplifting.
So I'm living this strange amazing life I never would have chosen, but am so grateful for. And I hold my Ella close who is my miracle, and my Ava, who was dropped by God and Charlotte and her first mother into my lap, around my pregnant belly where Lily is crazily kicking and flipping 24 hours a day, carrying the same strange amazing chromosomes as Charlotte, and wonder what other incredible amazing people and experiences and journeys are ahead for me and my little strange conspicuous family. I mean honestly, there are no other words. It's Amazing.