Wednesday, October 8, 2008


About 9 hours after Dylan was born, he was transferred to The New England Medical Center NICU. After some terrible miscommunication and confusion, I was discharged shortly thereafter so Dave and I could drive down to Boston to see our newborn son. We had only seen him twice, our son. And very briefly. We saw him right after he was first born, and then again as he was being wheeled out the door towards the ambulance, with his traveling medical team alongside him.

Those NICU days were by far the most difficult days of my life.

We got there pretty late on that first night. Dave and I were so lost...literally and figuratively. We were incredibly overwhelmed to say the least. I remember thinking, "Wait a minute. Didn't I JUST give birth to a baby today? Why am I climbing stairs, walking through parking garages and trudging through long hallways looking for my son? Shouldn't I be lying down with him in a hospital bed or something?!"

The doctor who came to talk with us that night was hopeful. He told us that by no means should we assume that Dylan has Down syndrome. We told him that at the other hospital we had already been told that they were "98% sure that he did have Down syndrome". The doctor said that nothing was proven yet and we should wait until the FISH test results come back. This was on a Saturday and the test would not be done until Monday. While I appreciated that this doctor was trying to be nice and all, in our hearts, Dave and I already knew what the results would be.

The next morning Dave and I had a difficult time going into the NICU to see Dylan. Instead we walked straight into the parent's room and just hugged each other. We just stood there in a hug, crying. I remember feeling so incredibly sad...and terrified and heartbroken. I felt these things for myself, for our son and for our family.

As we stood there hugging each other, we overheard someone approach a younger couple and explain to them that the priest was on his way for the service of their lost baby. I realized then that we were lucky. There we were crying over our son. Our son who was lying in a room just down the hall. Yes, so he has Down syndrome. This couple lost their baby. We did not.

The days passed and we eventually received the results from the FISH test. We were not surprised when they told us that Dylan has Down syndrome. I feel like there was at least some warning about that. A 98% warning. We were, however, surprised to find out that he failed his hearing test and he also had an AV canal defect which would require open heart surgery at 4 months of age.

Dylan. He has certainly surprised us in many ways these past few months. But in all honesty, I would say that the biggest surprise, is how much we are already in love with him.


Kimberly said...

Thoes were very dificult days Laur, I can't imagine how hard that was for you guys. But I definitly know how amazing Dylan is and how loved he is by so many people.

Cleo said...

I'm very moved by this post Laurie. Dylan has been such a blessing ~ . I think that because of the last three months you have grown into a stronger, wiser and better person. :)

Lisa said...

Oh, man, Laurie, your description of the NICU days brings back so many feelings and memories. You and I experienced something very similar, and a lot of it we were experiencing at the same time. I still remember when you sent me that first PM through pg. org to tell me that you had given birth just a few days before me, to a little boy who was diagnosed with DS and had to be in the NICU. I remember so well what you describe about being just hours postpartum and trudging around a hospital when our bodies so desperately needed rest and healing.

Gosh, it's all making me cry. It was such a hard, hard time, for both of us. But look at us now, and our beautiful little guys. We're very blessed.


Tricia said...

I can relate to this post SO well. I was discharged a couple hours after Georgia was born to follow her to the big-city NICU as well. When we found out she had a heart condition, all of a sudden DS meant very little (in terms of things to be upset over). And yes, I too climbed many stairs etc...I still wish I'd had the balloons and the baby-moon, but instead we had the scary, oft-demeaning, and anxiety-ridden NICU. I hear you. I really do.

But we ARE blessed, just like Lisa said! And stronger for it.

Andi said...

You continue to amaze me everyday. You are such a beautiful soul. ::.Hugs you::

Lis said...

Your attitude and outlook over all this is so wonderful and inspiring. I love you

Angela said...

Laurie, Thom is looking down on you and your family right now. Continue to be a wonderful mother. He would be so proud. I am in Haverhill by the high school. We are also going through OT and PT and speech therapy with Victoria. She was diagnosed with autism spectrum disorder. But just remember one thing, he is still that same little man that kicked you for nine months and made your world a better place. Lets get together soon. All the love. Angela (Ramos) Licari

Angela said...