Monday, April 6, 2009

This chapter

It's not like I haven't been thinking about how to write this chapter of the story - the part after Isaac's birth. I have. I just don't know what to say. How can I describe how we felt when we finally knew the answer to 24.5 weeks of questions? How can I explain how our hearts broke when we had to see Isaac struggling to breathe? How do I say how hard it was to watch our family holding him knowing that was all they'd ever have? I don't think I can.


Thursday morning, I think it was around 5 a.m., the neonatologist who had been in the OR came into our room. He said he was certain Isaac had Trisomy 18. He hadn't seen it very much, but the condition has specific features: elfin ears, short neck, small facial features, clenched hands. CJay asked how long he thought Isaac might live. I don't remember the answer because at that same moment my mom asked me, "which one is that?" (Once we knew about the cystic hygroma, we'd all done our research - Turner's, Noonan's, Down's.) I didn't know which syndrome, but I knew one thing: it was lethal. We cried a little, but not as much as you might think. It was an answer. Not the one we wanted, but at least our months of limbo were over. At least we didn't have to wonder anymore.

It was a while before we got to see Isaac. Mom and CJay went down to the NICU before I did. I had to wait on Nurse Ratched to get a wheelchair and take her sweet time helping me up. Of course she tugged on my catheter and hit every threshold at mock speed on the way to the NICU. (Did I mention she pulled on my catheter?)

I could barely stand up to see Isaac in the incubator. I was in terrible pain, but of course I had to look at him. I had the same feeling I had when we first saw Isaac in the OR - is he mine? He was so small. The respirator was loud. Alarms were sounding. It was hot. And I could see more wires and tubes than skin. CJay said the nurse told them not to touch him. "He's mine! I'll touch him if I want!" I didn't mean to scream about it, but we should be able to touch him. We had waited like every other couple waits. We were shocked at his mere existence, and he wasn't even going to live. So I touched him. All three of us touched him.

I really don't remember many details of the rest of that day. After my dad arrived, CJay and my mom headed back to our house to shower and meet CJay's parents. I was glad Dad was with me when the doctor came to say that Isaac's lung were immature and he had crashed. We would have to decide when we wanted to take him off the respirator. I didn't know how to answer her questions or what I was supposed to ask. But Dad talked for me. He asked how long Isaac would live.
"Give us a number. Are we talking 50 days?"
"I don't think he'll live 50 minutes."
What do you say to that?

Dad didn't want me to call CJay right away. He told me to wait and let him sleep and shower so that he could handle what was getting ready to happen. He was right. It was better for CJay. The doctor came back a couple hours later to say the test results were back. Isaac had Trisomy 18. Like she had said before, it didn't change anything. Either way, his lungs couldn't support him. I wasn't afraid, just tired, angry, sore, and shocked. I couldn't figure out why it was taking CJay so long to get back to the hospital. In the meantime, Dad took me back to the NICU. I'll always be thankful that he and I had a chance to be alone with Isaac. We cried and stared at him and talked. My dad was stronger than I could be, and it was what I needed.

When CJay got back to the hospital, I told him the latest news. We went to the NICU together and were finally able to hold Isaac. I can never explain how such intense joy and sorrow can exist simultaneously. It makes no sense that we could know the outcome but still laugh and smile. Maybe some people can't, but we did.

We spent Friday holding Isaac. The NICU nurses brought him to our room and let us take turns holding him while a photographer from the organization Now I Lay Me Down to Sleep took pictures. It was bittersweet. After an hour or so, the nurses took Isaac back to the NICU. I wanted to take a break before we had to say goodbye.

It was almost 8:30 p.m. before we went to our private family room in the NICU. We took turns holding Isaac again. We took pictures and cried. Seth played music from his iPhone, and Isaac kicked and squirmed to the sound of the piano - what I had felt many times before. (CJay even told Isaac a dirty joke.) CJay and I changed his diaper and dressed him. It wasn't necessary, but it was special.

I had to be the one to say it was time to take him off the respirator. As his mother, I felt like I had to be the one to let him go. His color was getting darker, a sign that the carbon dioxide was building up in his system. Our NICU nurse and next door neighbor, Kitty, came in to take out Isaac's breathing tube. She had come to the hospital on her day off to be with us. I had asked her to be the one to take out the breathing tube. She was wonderful; I could go on and on about what she did for us.

Isaac didn't live long without the breathing tube. We were so sad, so tired, but Isaac was worth that. He was worth those 24.5 weeks of questions and worry and prayers and tears. I think people need to know that - he was really worth it.


sarah s said...

Love you guys. Still praying for you.

Stacy D said...


He is so beautiful. You are so right when you say it is the hardest thing to have such joy and sorrow exist at the same time; and you are so right when you say that he was worth it. Your sweet Isaac was worh it, my sweet ISaac was worth it... they are so, so worth it.

Still praying for you...

~ Stacy

patti baker said...

Dear Whit,
When I woke up Monday morning, you were heavy on my heart. I now know that was just your God placing one more person in line to pray for you as you struggled to share your heart on the pages of this blog. I thank you for your courage. We love you and CJay.
Tony, Patti and Cecilia

Brooke said...

I love you girl. This is truly heartbreaking...I am crying my eyes out. I am so glad you shared it thoug! He is precious. You and CJay are precious. Never forget theat! Thinking of you and praying for you all the time! :)

johnginnyalexander said...

Thank you for sharing your story! I am praying for you! You are a wonderful mother! Love, ginny alexander

Belinda said...

Good Morning Whitney and CJay;
I am sure you do not remember me, but I am Brooke Long's Mom and I think we met before you moved.

I am not sure what angel led me to your blog this morning, but I am thankful for the opportunity to share in Isaac's life moments through your beautiful narrative. I have always believed that God gives special babies to special people. You and CJay have again confirmed that belief. Perhaps it was most meaningful when I realized that today was also the day that God had to say goodbye to his earthly son and welcome him back to heaven.

As a nurse and a Christian I have often asked the question of "why this child, or why this couple?" But my faith answers with the knowledge that God has a plan for each of us and that the special challenges that Isaac brought in his short life will make both you and CJay stronger in yours. Your ability to communicate your feelings in this situation is a gift you would have never known in another situation and perhaps that gift will lead in you down a new path in life.

I will continue to pray for you and CJay and Isaac, and that the days to come will not erase the memory of his short life, but will strengthen your love for each other and for life itself.

Have a Blessed Easter,
Belinda Swearingen

John said...

We think of you, CJay and Isaac daily and are continuing to pray for your family.

John & Chelsey Hall

JI said...

With things like this, the human side of us wants to ask why. I always wondered, "why Mom?" and God finally revealed to us that it was because she was the only one strong enough to go through it and touch so many people the way she did. I feel that is "Why Whitney and CJay?" Your strength and faith is inspiring.

I love you guys. I'm thinking of you and praying for you everyday.

~Kelly S.