Well, Greyson and I have been hanging out the past few days. There aren’t many changes going on but we are still monitoring Grey’s PDA. Moreover, Greyson will have another echocardiogram tomorrow and we will evaluate the opening size. I promised myself this week that we would not fret over this PDA and I must say- I’ve done a good job. I’ve calmly watched Grey “chill and grow this week.” We all laughed last weekend because one of the nurses told my mom that Grey needed to “chill and grow.” He’s made quite the impression in the NICU with his little fits. He definitely keeps those nurses busy. However, we have noticed that he is tolerating touch much better this week! This is a huge improvement and I hope he continues to chill.
Greyson is also looking a little plump this week! He is clearly filling out. The nurse practitioner explained that he might lose a few ounces here and there because he is currently taking lasix to reduce fluid retention. He actually weighs a little more than he should right now- which could indicate infection or fluid build up. I’ve been getting so excited about his weight gain and then I was quickly jerked from my high when told “too much weight gain is actually bad.” In the NICU you try to hold onto the tiniest of positives. I was thrilled on Tuesday when I noticed Greyson was wearing a bigger diaper. He is actually wearing a brand name, pampers, and isn’t wearing the specialty diapers made for tiny tots. I immediately sent Matthew a picture via phone. I have to say, it was one the highlights of my day.
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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 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.
Hi Kiley, Welcome to Holland. We have tulips :)
Kim and Mary Farris sent me your way. As a fellow mom of a 1lb 13ozer and a PreE and HELLP survivor (mag sulfate. the mere name makes me shiver) I can relate to your posts and some I cannot. The NICU experience is different for everyone, and the same for everyone.
I was reading your comments on the weight gain, and then lasix. LOL I was in your same boat on the weight. Took forever to get our baby to 2lbs and when he got there I made a sign and took cupcakes. But I was always and forever checking him over to see if he was swelling at all.
If you need to chat or vent, you can get my email from Kim. We also did the same thing as far as starting the blog, and it was a lifesaver. If you want to see our story, just let me know!
I'll be keeping a prayer out for your sweetie and your family. And if it helps, a year ago we were holding in two hands a tiny less than 2 pound baby, this year we are holding a 15lb wiggle worm who smiles, chats, eats cheerios like candy, waves, claps and sits on his own. Somethings never change (the wiggle worm part!)
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