"Whether we are filled with joy or grief, our angels are close to us, speaking to our hearts of God's love."

Sunday, April 11, 2010

April 11, 2010

Benjamin is one month old today! I must say, as he’s getting bigger he’s starting to look a lot like his older sister. He’s weighing in at 850 grams which equates to 1 lb. 14 oz. Besides a little swelling in his tummy, this should be his true weight. The nutrition he’s been getting has been bumped up a bit because his growth has been so slow. He’s going to be on perinatal nutrition for months (even when he does start feeding) and he has to have his bilirubin levels monitored closely because it can damage his liver. He’ll be getting another blood transfusion, but other than that, he should have somewhat of a quiet day.

I did get to Kangaroo hold him last night! It was both a wonderful experience and yet a bit stressful. It was great to finally bond with him, but it was hard for me to relax because he kept desating (his oxygen level would drop).

We had our first family meeting at Children’s Friday afternoon to go over the results of Benjamin’s MRI. Apparently the images show extensive brain damage on both sides of the back of his brain, but we were told we will have to wait until he gets older to determine exactly what this means. We didn’t really get any answers. When I asked if my son might not be able to ever walk or talk, we were only told “it’s a great possibility.” Dr. Hansen said that we would probably be dealing with vision problems as well as issues with motor skills, but we must wait, wait, wait. After this unsettling consult, Ryan and I decided we can’t think about what may or may not be, we have to focus on the issues at hand (Benjamin’s stomach problems, his lung disease and his slow growth). We went back into the NICU and he was bright eyed and alert and we were able to hold his little hands.

He’s down to 1 mcg of the Fentanyl and they may take him off the drip completely today. He was showing some signs of withdrawal Thursday night and early Friday morning, but now he seems to have adjusted quite well. We thought about changing his nickname to “Fent” because he’s been on the narcotic for a month now!

Benjamin continues to amaze us and we couldn’t be more proud of him. We are so in love with him, and although this wasn’t the path we would have chosen for both of our boys, we cherish the little miracle we’ve been given. A friend of ours shared the following poem with us and I think it explains in a nice way a few of the emotions we’ve been feeling and what our future may hold.

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.


  1. God chose you as Benjamin's parents for a reason. He is so lucky to have you.

  2. Happy 1 month birthday Benjamin!

  3. It is very important to take only one day at a time right now. I know so many people who were told that their child might not walk, talk, etc and far surpassed doctors expectations. The reason is that the parents' never gave up and kept believing that their child would succeed. No labels, just bonding and persevering. "Perseverance" is a poster on my wall. It says "To remain steadfast against all odds." I saw this once on a student's T-shirt and loved it so much that I typed it up and had it as a saying on my computer. Later, a student made it as a poster as a school project. This saying gets me through so many things. Also, the saying that gets me through scary times: While breathing, repeat over and over until you are okay, "Faith in, fear out." Although I don't know you, I am a friend of Kelly's from Western Mass. I've been praying for Benjamin and your family. We are frequent "guests" at Children's. Benjamin is in good hands - not only Children's, but Gods.