Thursday, December 09, 2010

A letter

I took a lesson from my bloggy friend Jenny and wrote a thank-you letter to the NICU where Dylan lived his first month of life. You see, I didn't THINK the feelings would hit me. I've been pretty even-keeled when it comes to my feelings about Down syndrome... but one thing I have NOT been so easy-going about is those feelings I had while Dylan was in the hospital. It is absolutely petrifying to live life not knowing what the next day is going to bring. I am a total comfort-zone type of person, and when my comfort-zone is being challenged... well, how I react really depends on the situation. My husband and I handled it the best that we could. There were mornings that we both woke up crying because we didn't want to be in the Ronald McDonald House anymore. We didn't want to be without our 2-year-old. We didn't want to go out in the cold, eat out (or in a hospital cafeteria.. or in the RMH kitchen) anymore. We wanted our family back to normal so badly, and all we could do was cry. There were evenings when we were so drained from the entire experience, all we could do was bicker. There were days where exhaustion set in, and all we could do was laugh. It felt inappropriate, but we had to. We had to survive how we knew how.

Dylan had the very best care imaginable in the NICU. He had awesome nurses, top-notch doctors, and nearly everyone we encountered was nice. They made a crappy situation tolerable. I wanted to thank them in person-- big M was not ready for that. I totally understand... we DID go IN the hospital a few days ago (Dylan had an appointment up there in their physicians building... we wanted to check out their new construction, since we haven't seen it in a year. It looks awesome!), but we didn't go to the NICU floor. So we decided that mailing our letter would be best. It is on the way to them now. I gave them this blog address to look at pictures of Dylan if they wanted to (so hi to all the OUMC staff that might stop by! :) ).

I don't think there's any way I could say "thank you" enough. Our guy is healthy, happy, and wonderful, and it's because he had such an awesome start.

**I guess I could actually post the letter, since I have access to it now. Don't tell anybody I wrote the other post at work. I will deny it. *ahem*

To the Doctors, Nurses, and staff in the NICU:

“Long after people forget what you said or did, they will remember how you made them feel.”

My name is Amy C*********. My son was born December 29th, 2009, at OU Medical Center, Children’s Hospital. He has Down syndrome, and he was born with doudenal atresia. He lived his first month of life in the Neonatal Intensive Care Unit at your hospital.

This year has been a long one in some ways, dealing with Dylan’s diagnosis and getting his health stabilized. In other ways, the year has flown by. It seems like only yesterday, your doctors, nurses, and staff were like our family away from home.

I’m writing this letter to thank you. Thank you so much for the outstanding care our son received. Thank you for taking care of his needs and ours. My husband and I felt like our world was starting to crumble in on us, having to stay away from our home and our then-2-year-old for so long. You really took good care of us in that time, making us feel welcome to stay in our son’s room during the day and making us feel involved in his care.

Now, I know you probably don’t remember us. It is a sad fact that you get a ton of babies in your intensive care unit, and I can only imagine how many you’ve seen since you saw Dylan. You might remember my husband in all of his Texas Longhorns gear, but that’s a different story. :) But the point is– you don’t remember us, but we remember you. And we always will. We remember sweet Jessica. She was Dylan’s very first NICU nurse on his very first night outside of the womb. We remember Kristen, who was great with Dylan and helped me get situated with pumping in Dylan’s NICU room. We remember Nicole, who was one of our favorites, along with Mary, Tiffany, Jennifer, and Ann. We remember Blake and Jena, and how they played music to our boy. We remember some of his night NICU staff too, even if we can’t remember everybody’s names. :) We remember Bonnie, Janie (who had to put up with me bawling twice. Sorry about that! heh), and the other Nurse Practitioners. We remember Kris, the lactation consultant, and how well she got us set up to give our son the best start in life. We remember the young ones at the front desk and how sweet they were. We remember Dr. Sheldon, Dr. Dannaway, and Dr. Gottipati, and how much help they were to us when he had questions. We remember the Pediatric Surgery team and how wonderful they were too.

Thank you for knowing that, when parents are in the throes of NICU life, it is important to make them feel okay about their situation. Thank you for training your nurses and staff to be compassionate and to field questions they’ve answered a million times over like they don’t mind explaining it again. Thank you for the tiring work that you do. I can only imagine how often your heart must break up there, dealing with sick babies or worse.

Dylan thanks you too, as he’s a healthy, happy almost-1-year-old now. He has a little hair, no teeth, but lots of chunk-rolls (thanks again, Kris!). He is learning to hit his milestones at Dylan-pace. He is such a wonderful baby. And he’s here, healthy and beautiful and wonderful, in part because of you guys. Thank you.

Amy, Michael, and Dylan C********


Ashley said...

Aww this made me tear up! That's such a great idea!

Jenny said...

Awesome :)
I felt so much of what you wrote here...Some days it just felt like there was no end in sight and I just wanted my normal life back! So glad those days are over and Russell and Dylan are both happy and healthy...Thats great you sent a letter off, I dont think Nurses get enough credit for the care that they give...
Its almost Dylans Birthday!! The first year goes by so fast doesnt it!!

Zack Homeless said...

Hope your child will get well and stay well. You sound like a pretty cool parent