Our Babies

Our Babies
Luke and Claire

"Welcome to Holland"


By Emily Perl Kingsley, 1987. All rights reserved.


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.

Friday, May 7, 2010

The First Night

It's pretty surreal to finally have Luke in the house with us.....BUT IT IS AWESOME!!!! We had an event-packed first night at home. First, Grandma Godinez drove as fast as she could from Kansas so she could be here to help out for a few days. In fact, she even managed to beat us to the house so she was waiting for us when we arrived! She couldn't wait to get her hands on the cordless baby since he was still on oxygen during her last visit. Then, after we had a chance to get settled, our neighbors, Emily and Jeffrey, knew it had been a long day waiting around at the hospital for Luke to be discharged, so they brought over a delicious dinner to celebrate. A bit later, the newest addition to the "cool block", Robert and Lindsay, came over to join in the festivities. The girls hung out inside while the boys did some "macho man" celebrating over cigars and adult beverages.

For his first night away from his brigade of nurses, Luke was a superstar! Although I was a bit nervous not to have the security of the oxygen monitors to let me know he really was okay, we all did just fine. Patrick and I traded off hanging out in Luke's room to do the feedings/diaper changings so the other one could get in a solid few hours of sleep. We started off the night with Luke in the pack 'n' play in our room, but then decided neither of us was ever going to get any rest! Plus, Luke REALLY wanted to spend some time in his room since he had been hearing so much about it for the past few weeks.

I don't think we ever fully appreciated a day at home with no plans in sight before Luke came along. We're usually running around doing 10,000 things, but we're taking a break from that for a bit. In fact, the cherry on top of our day is that I even managed to finish my Master's courses for the semester - thank goodness! We both have a break from our jobs, I have a break from grad school, and now it's time to do nothing but spend a fabulous day at home together as a family.

These Are The Days!





Thursday, May 6, 2010

We're Home

Home sweet home.....a blog update with lots of new pics is on its way! Hang tight while we love on our baby :)

Off to the hospital!

Well friends, Melissa and I are off to the hospital to pick up Little Baby Luke! Wish us luck! It's been a pretty restless 12 hours!
-Patrick

Wednesday, May 5, 2010

One last day

And......we've made it. 20 days driving back and forth, countless hours staring at the monitors hoping for a change, and too many prayers to count. Luke is finally coming home.

Today, I was chitchatting with our nurse, Debbie, about all the babies she has seen over the years working as a NICU nurse. Some babies are there for only hours while other babies have had to stay close to a year. Some babies are flooded with visitors from family and friends while others don't even get a visit from his or her own parents. Most make it out, but there are others who never get to see life outside the little yellow rooms with blinking monitors.

When thinking about these scenarios, my only conclusion is that our experience was nothing but positive. From the outpouring of support from everyone to the incredible care we received from our doctors and nurses, it was probably one of the most positive experiences of our lives up to this point.

Tonight Patrick and I spent the evening organizing the gifts we've received and re-reading the cards of congratulations and support. Someday when Luke is older he'll see the cards and read the comments from this blog and the e-mails, and hopefully realize that he was one of the luckiest kids to go through the NICU.

Tuesday, May 4, 2010

Big Day!

It's looking like we're going to meet our Mother's Day goal a few days early! When I got to the hospital today, my OB, Dr. Kinder had stopped by to check in on Luke (and do a little snip snip). On his way out the door, he casually mentioned the tentative homecoming plan that he had discussed with Luke's NICU doctor. The second he left I tracked down Luke's doctor to confirm the plan, and although he can't guarantee Thursday, it is looking pretty likely that the little dude will come home then. The doc thinks that one more day of observation and strong eating is going to earn Luke a "Get out of Jail" card!!! Tomorrow morning Patrick and I will take the NICU discharge class that all parents have to take, and we'll keep our fingers crossed for a Thursday homecoming!!

That wasn't all today....

This afternoon Luke received a visit from Fr. Joe, our parish priest. He told us the story of how when he was born in India, there wasn't very good medical care and the person who delivered him thought he was going to die because he wasn't breathing very well. While his dad was outside mourning the loss of his son and building a coffin, Fr. Joe miraculously started breathing better. When he was growing up, people in his town always told him the story of how he came back to life to be with his parents. After he finished the story, Father gave Luke a special blessing for him and all other sick babies who just need a little extra help for a healthy life.

Sunday, May 2, 2010

Cordless Baby

We've gone cordless!!! Just days after ditching the oxygen, Luke decided he would chow down on his bottles if it meant getting rid of the feeding tube. He's still not quite up to par on his nutritional requirements, so no coming home quite yet, but mommy and daddy have a sneaking suspicion that homecoming is in the pretty near future. Everyone keep your fingers and toes crossed that Luke makes it home to celebrate Mother's Day!




We'd like to give a little shout-out to the students in Mrs. Kilgore's class that are following our blog. Melissa's good friend, Erin, from Sigma Kappa contacted us to see if her mom, a high school teacher, could use the blog in a parenting course she teaches. Of course, we were thrilled at the idea if it meant that the students could learn about the joys, surprises, and reality of parenthood! Also, some of you have contacted us off the blog to see if you could share it with others. Always feel free to pass the blog link along because we love sharing Luke's story with others.