Saturday, June 27, 2009

I went to Holland once when I was 20. Maybe it's time to go back for a different view.

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 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 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...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 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.

© 1987, by Emily Perl Kingsley. All rights reserved. Reprinted with permission of the author.

Wednesday, June 24, 2009

Oh how the belly grows

So the baby passed the inspection for another week. They're now thinking the fluid around the abdomen is related to the heart condition. This makes more sense to me and I'm glad to hear that it is mostly likely not another whole issue. It other news, I'm getting tired of lugging around this extra weight.

Thursday, June 18, 2009

People smile and tell me I'm the lucky one, and we've just begun, I think I'm going to have a son...

So there was no fluid around the heart, just the abdomen. That could mean 3 things:
1. It's nothing and will go away
2. It's a lymph fluid issue that is rare, but seen occasionally in baby's with Down Syndrome, that requires no treatment, just monitoring and he may have a big belly
3. It's a sign of GI infection in which case, the baby could develop distress and my placenta becomes unsafe and my B/P goes up requiring quick delivery.

So basically, they have no clue. I'll be getting weekly non-stress tests and 4D ultrasounds at the Perinatologist. Depending on the baby's abdominal fluid level and activity, they will monitor closely when he's better out than in. If the fluid increases and is concerning, I'll deliver at Good Sam where they have a high level nursery. It's just one more thing to worry about. I'm tired.

I'm reading the book "Gifts: Mothers Reflect on How Children with Down Syndrome Enrich Their Lives". One of the chapter's says, "This baby, who was fighting for his existance, was a part of me. If he could fight to survive, then surely I could fight through my fear and anxiety to find the answers to help him".

Tuesday, June 16, 2009

Happy Birthday to me

Monday was week 2 of non-stress test and ultrasound. The baby weighs close to 6 lbs now and my due date has been moved up to July 17th. They did notice fluid around his heart and abdomen yesterday. I have to go back to the perinatologist for another 4D ultrasound. I really don't like that place. You only hear bad news there. We'll see what he has to say. The baby feels lower and I feel much bigger. I'm thinking he'll be coming soon. I'm nervous about tomorrow. In other's my birthday. I never thought my wish for my 27th birthday would be to have a healthy baby.

Sunday, June 7, 2009

Can you really call a boy Cash?

After we had the first ultrasound, Justin lovingly began referring to the baby as "the cashew", saying things like "how's the cashew been feeling today?" (meaning, how's the morning sickness). Overtime, this has shortened to Cash and has stuck. Everyone calls this baby Cash. I think I'm the only one that will refer to him as Gabe. It is incredibly cute, but hopefully he doesn't have too much confusion over what his name is.
Yesterday we went to an ice cream social the Down Syndrome Association had. It was the first time I'd seen all these kids together and playing. I felt a little emotional at first, but felt a little better as I talked to people. All the kids seemed to be having a blast. The parents all seemed to know each other and were very supportive. One family was telling us that their two and a half year old daughter just started walking last week. They were saying it with such such an accomplishment. I think it my eyes I still saw it as a delay. I'm hoping my way of thinking will switch over. I'm sure it will with my child as I go through the journey with him.
I started having Braxton Hicks contractions last week. I've had 10 so far today. There isn't a real pattern with them, but I have spurts when they are frequent. It kinda makes me nervous. I have a feeling this baby will be born early....I just hope not too early.

Monday, June 1, 2009

showers and nursery

I had my first baby shower 2 weeks ago. It was the Beiting's/Wehage baby shower. It was lots of fun. It was good to see everyone. Plus, I got some pretty cool stuff. Baby stuff is so cute. Justin finished putting together the crib, changing table and rocker. David also came over and helped us paint a tree on the wall of the nursery. It's all coming together. I also met Martha from the Down Syndrome Association of Greater Cincinnati last week. It was so nice to talk to her. They are having an ice cream social this weekend for the Early Matters group (in-utero to 3 years). It will be so nice to watch the kids play. I started having some Braxton Hicks contractions last week. My stomach just turns to a hard ball. It's so weird. I'm starting to get a little nervous about the delivery. It's not really labor that makes me nervous...just the part where they cut the umbilical cord and the baby's heart is functioning on its own to deliver oxygenated blood. They say everything should be okay, but I am happy a neonatologist will be there just to make sure.