MORE photos!

Getting a haircut that turned into a buzz.

Happy baby Jonas!

Spending some time in the Bumbo.

He's even cute when he's angry. I think he was trying to tell me he was ready to be held.

Some photos

4 days old

2 weeks old - Photo shoot with Missy

First time he found his thumb!

We love our little Goober!

Christmas baby. SO SWEET!

Christmas Eve

Beautiful baby boy - 1 month old

UPDATE!

Okay, so it's been awhile since my last update. Though, to be honest, there really isn't much new information. But here's the latest.

We had Early Intervention come to test him a couple weeks ago. Because of his Mosaic Down syndrome, we get the advantage of bimonthly testing to see how he's developing and any therapy he may need along the way. They test his social/emotional development, his fine motor skills, gross motor skills, expressive development, self soothing ability, and... I can't remember what else. This first test showed he's developing right on track so far - like a typical 2 month-old. In fact, for his social/emotional development and fine motor skills he tested a month ahead! We're thrilled! Our case worker, Carrie, will come twice a month to see how he's doing and if at any point she sees he's falling behind and needs help we'll set up therapy appointments.

Our sweet baby boy is doing amazingly well and we love him more each day. He's started to smile at us, especially when he first wakes up in the morning, and it's so fun. He tries valiantly to suck his fist and thumb but can't figure out how to keep it in his mouth. I love how he squawks at us before he cries. I love how he quiets down as soon as I put him on the changing table and stares at me intently. I love how he snuggles in when we hold him. I love how he stays asleep in his car seat when we're out in public and wakes up to squawk at us as soon as we get home. He's the sweetest baby ever and we love him with all our hearts. 

We'll keep you posted when there's more to post!

HE'S HERE!

The Birth Story:

We went in to be induced on November 25t, the day after Thanksgiving. Our doctor wanted him to come 10 days early to make sure he wasn't going past full term because there is a risk of stillbirth with babies with Down syndrome who do. I was both hesitant and excited to be induced. I'd heard horror stories of contractions on pitocin and really wanted to experience the excitement of going into labor on my own. But I was also excited for baby to come early and to have an end in sight. 

So we went in at 9:00 p.m. on Friday November 25th. My doctor was going to be at the hospital all day Saturday so she wanted me to come in late and labor through the night so she'd be around to deliver Jonas. We got settled in our room and I got hooked up to the IV with the water or whatever it was and the pitocin. I was already 3 centimeters dilated and 70% effaced so they didn't have to do the cervical ripening stuff first. Once I was all hooked up we invited Mat and Missy to come over. We played cards and Rummikub 'til about midnight and it was fun pretending like everything was totally normal. Nurses kept coming in asking if I was feeling anything but I wasn't so they increased the dose. After Mat and Missy left around midnight we happened to notice a weird chemical-y smell. Looking around, we saw a tube dripping liquid all over the floor. When we checked where the tube was connected, we discovered it was the pitocin. Yep, no contractions for 3 hours because the pitocin was inducing the floor. Awesome. 

Once the pitocin was actually going into my IV the contractions started around 2 a.m. I felt good and strong and Spencer was so amazing helping me get through each contraction. I walked around in the room, sat on the edge of bed, and had Spencer sway with me and rub my back. At around 5 a.m. they broke my water and things got real. The contractions were crazy strong and making me shake uncontrollably. Finally they overwhelmed me and I was ready for the epidural. Unfortunately it took another hour before I felt any relief. The anesthesiologist started me on a low dose because of my size and it took awhile to figure out that I needed the full dose. The epidural worked its magic for a couple hours but then wore off so I got an even stronger medicine. Apparently I'm pretty immune to paid medicine. 

You would think that by that point I was pretty doped up and loopy but I was actually still very coherent and able to feel the pressure of each contraction. I felt when I was ready to push and my doctor and nurses relied on me to tell them when the contractions came, which I really liked because it gave me control. The best part: I only pushed for 20 minutes! Amazingly, even with all the pain medicine, I could feel exactly how to push and it felt really powerful. 

Jonas came in the world, happy and healthy, at 3:13 p.m. He was alert and content to just check out his new world. The only noise he made was after the vitamin K shot and even then it was just a quick squeak. He was pretty congested so the nurses wanted to make him cry a bit to loosen it up but nothing they did upset him. The room we were in was connected to the NICU so they could quickly check him out but instead they decided to just check him in our room, which I was SO happy about. And he checked out great! The doctor and nurses said they wouldn't have guessed he had Mosaic Down syndrome had they not already known. He got a 9 on his apgar score and everything else checked out healthy and typical! Now we get to wait and see how he develops to get a sense of how his MDS manifests itself. 


New Tests:


Because the physical manifestations of his MDS are non-existent, my doctor ordered a blood karyotype. We recently got the test back and turns out that in his blood the ratio is 25% Trisomy 21 cells to 75% typical cells. This may mean his manifestations will be very mild, but in reality we really won't know how or where or how severe we'll see the manifestations of his MDS. But it's interesting information to have, nonetheless. He also had an echo just to make sure there wasn't any problems that they couldn't detect from the fetal echo and his heart is still healthy. We've also had a couple appointments with his pediatrician and she says he is healthy and doing great. So, physically, he's great! We're just happy to have a healthy and happy baby boy, no matter what his chromosomes say. 

 

October is Down Syndrome Awareness Month!

Who knew?! Not me. Well, I do now, and so do you. In celebration and anticipation of baby Jonas' arrival, I decided to create a fund-raising page in conjunction with the IMDSA website. So little is known about MDS that research and awareness is greatly needed. That's where your donations will go.

Also, on a less altruistic note, if we reach our goal (which is pretty high, I admit, but it's what will beat out the competition) then the three of us will get free passes to the next IMDSA conference in San Antonio, TX! So get to donating and letting others know about this blog and the fund-raising page. There is a permanent link on the side bar, but you can access the page here, too. 

Thanks in advance and we love you!

Our Sentiments Exactly

A friend gave us a copy of this essay written by Emily Perl Kingsley, a mother who had a child with Down syndrome. It expresses exactly how we feel. Enjoy!

WELCOME TO HOLLAND

by Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared the 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, Michaelangelo's "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 flight attendant comes 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. 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, Holland has tulips, Holland 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 go away, because the loss of that dream is a very significant loss. But if you spent 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.

Our thoughts echo hers exactly. And we haven't even met Jonas yet! We've already experienced so many wonderful things just by knowing about his anticipated special needs. The love and support and friends we've met have already made us really appreciate our "Holland" and we're excited to see more.

Fetal Echo Results

We had the fetal echo today. It was basically a really long and boring ultrasound of Jonas' heart. They had the lights almost off and barely spoke to us. The technician was training and Jonas was moving a ton so it was taking forever. The monitor was behind me so I couldn't see it easily and even when I did watch, I had no idea what I was looking at. It was pretty hard not to fall asleep. Spencer, however, had no problem dozing off in the corner. Truly, it was boring.

Finally they wrapped up and had the cardiologist come in to look for himself. When he was done he invited us into another room. The look of the room, all cozy with a nice couch and no desk, made us really nervous. They don't try and make you comfortable to tell you good news! And the fact that he moved us to a more private place to talk had us pretty scared. But he told us everything looked great! He just wanted to talk privately in case we had any questions. PHEW! He explained a little bit about what he was looking for and how baby hearts work and then sent us on our way. 

So now we can breathe a HUGE sigh of relief. Baby Jonas' heart is strong and healthy so hopefully we won't have many medical issues to deal with when he's born. I'm starting to feel hopeful that we'll just have cognitive issues with him, which will be stressful in it's own way, but not scary. And to be honest, I'm kind of excited for the challenge of finding the best ways for him to learn with us and in school.

Thank you again for all your prayers and good vibes! Jonas is one loved little boy.