Toot does NY!

My last post was somewhat debbie downer, so I figured I'd try and write one that was slightly more upbeat!

My husband and I took off Friday night to NY to visit my sister. I should say tell you all that I am very lucky in that my sister doubles as my truest friend in the world. I may be the older sister, but she is my confidant and has been a constant source of support, encouragement and love throughout my entire life. Sometimes it's as if she's the older sister ... she is a great aunt to my nephews, and is already the best aunt to my little Toot. I so enjoyed spending the weekend at her place and I love that she and P get along so well too. We truly had a great time.

We arrived at Penn Station Friday night and headed over to K's place. After a quick bite to eat, we all ended up falling asleep on the couch! Saturday morning we woke up, had breakfast delivered (which I just thought was the coolest thing!) and then headed to Battery Park so we could take the ferry over to see the Statue of Liberty. It was such a touristy thing to do, but none of us had ever seen it, and despite all the lines, I am glad we did! It's amazing to think of what Lady Liberty truly represents to our country. Here's a dorky picture of P, Toot, Lady Lib and I on Valentine's Day:


We took the ferry back to Battery Park, and then headed over to Union Square for a late lunch. NYC is so refreshing. We walked everywhere and there is just always something to do. I am not sure I could ever live there now, but I wish that I had when I was fresh out of college or something. I love visiting K there. She's been there about two years now and while I hate that she is far away, she really isn't that far away at all. Her place is great, and she is so happy there ... it's nice to see her in her element! After lunch, we walked over to Washington Square to meet up with friends at their place and just hung out for awhile. We all met up again for dinner in the West Village Saturday night. We went to this little Italian restaurant with live Jazz music and it was so good. And so not expensive either, which was great!

I felt alive and "normal" all weekend. I think I even looked happy a few times! It felt great to escape the house and our normal routine. P and I both enjoyed ourselves so much and it was very hard to leave on Sunday! We love making memories with Toot ... she is so a part of our lives already and I wish with all of my heart that someday she'd actually get to see the Statue of Liberty and NYC. I'm glad we'll have lots of pictures of her with us throughout this crazy journey ... she is our baby girl, our first child, and no one can take that away, ever.

P and I were kind of in let down mode (if that makes sense) on the train ride back and we were just talking about life and how it's hard to imagine things were so different two months ago before we knew about T18 ... we wondered if things will ever seem bright again because sometimes we both feel so subdued ... it broke my heart to hear him talk about how sad he is every time he sees a father with his little girl. He said he just always had this vision of a baby girl on his hip and Toot won't get to do that ... I always picture Toot as a two year old sitting on his shoulders laughing so I know exactly how he feels. He is going to be a great dad (he already is) and I wish I could somehow make this easier for him ... it is just so different for him. I feel like I am the lucky one because I get to be with Toot all day long. I feel her move, I talk to her, I just know her. He doesn't really get to do that although he finally felt her move for the first time last week and it was awesome. So bittersweet, but awesome nonetheless. Toot tends not to cooperate anytime his hands are on my belly, but she did last week and we both just smiled and cried ... our experience is so different than most people's ... sometimes it feels very isolating (more on that in another post) but it's our experience and we're really trying to make the best of it. We wanted a baby more than anything and yes things are going to turn out differently than we had hoped, but it doesn't change the fact that we love our daughter and are excited to be parents.

Bad Blogger!

I am sorry that it has been so long since I've posted! Sometimes I just don't have the energy to write ... or talk, or do much of anything besides work and sleep for that matter. But, a lot has happened in the last two weeks, so here goes.

P and I had an ultrasound and echocardiogram last Friday and got to see our precious Toot for about an hour. The ultrasound tech was awesome too and have us a ton of 3D pictures of her face, which was really neat. Toot didn't cooperate all that much though and kept putting her hands in front of her face everytime the tech tried to snap a picture. She was definitely the one calling all the shots ... the ultrasound tech had to chase her all over the place to get good shots. And at someone suggestion on the T18 website, we brought our digital camera to take some video of her dancing all over the place ... I think we even captured her heartbeat too, which I know will someday be a great source of comfort.

Our poor little Toot had a lot more markers of T18 than she did at previous ultrasounds :( She had choroid plexus cysts, pyelectasis, clenched fists/overlapping fingers, low-set ears, a big VSD (essentially a hole in her heart) and was also measuring about 3 weeks behind in growth. I also have borderline polyhydramnios (a diagnosis is made at amniotic fluid > 25 cm, I have exactly 25 cm) which puts us at risk for PROM and will make me very uncomfortable. At only 26 weeks, I am already starting to feel uncomfortable, my ribs (mostly on the left side, but occasionally the right) just ache and at times, it's hard to find any position that is remotely comfortable.

None of it means anything in and of itself, as everything we saw is common in T18 babies, but it kinda just reminded me of what we're dealing with. Before last Friday, there was nothing really suggestive of T18 other than the diagnosis itself and her growth restriction (which was only about 9 days behind). It made me think that maybe we were going to be one of the lucky ones and have a better outcome than what's predicted. I started having little flecks of hope and was thinking that maybe, just maybe, we'd get to bring our baby girl home!

Seeing everything we saw just brought home the fact that her prognosis is really just not very good. I talked to our doctor a lot about the likelihood that we'd get time with her and he basically said (very gently) that he never wants to take hope away, but that chances are, she won't survive labor and delivery. I spent most of the ultrasound with tears silently streaming down my face because quite frankly, it sucks so bad that she is going to die. P and I had a pretty sad morning that day ... it just hurts to much to know what we know. And that we still have such a hard road ahead is tough to process.

I've been reading a lot of other blogs by T18 moms and they are all so positive ... I feel guilty because while some days I feel very positive, there are others when I am just totally overwhelmed at what we're dealing with ... I think the body/brain have a way of only allowing you to cope with what you can at any given moment and for me, I think I kinda shut down to protect myself from the pain of all this. If I stop and truly think about the path we are on and the road ahead of us, it literally chills me to the bone. I have no idea how to do this. At times, I think I'm doing a pretty good job, but this is the easy part. I still have her with me. Every day I get to feel her move and kick and my love for her grows each minute. It's thinking about the future that overwhelms me. We are ultimately going to have to say goodbye to our baby girl and I cannot even begin to imagine the grief and despair we'll experience then.

My cousin lost her fiancee in a horrible car accident almost two years ago. When I talked to her about it and told her how amazed I was at how strong she is, she told me that at one point, she realized that she had a decision to make. She could either choose to be miserable, or she could choose to not be miserable. She chose to not be miserable and even though there are days she is, she still had a life to live and chose to do just that. I too have made a choice to not be miserable but there are days that I would like nothing more than to crawl into a hole and sleep. I don't though. I can't. I owe it to my husband and to Toot to live every day as best I can. I am fumbling through this the best that I can, but sometimes it just doesn't seem good enough.