Saturday, May 1, 2010

The Morning After - Receiving Goldie's Diagnosis

We just celebrated Goldie's 3rd birthday. She certainly got the better end of the birthday deal. While she was busy licking icing and tearing open gifts, I began climbing Mt. Transition. Instead of snow, its covered in paperwork. I still haven't reached the top.

Last year, I posted Goldie's birth story, but didn't go into any detail about receiving her diagnosis. This year, I feel better able to talk about it.  I can look back and see the best and the worst of myself. I've forgiven myself for the worst and let go of the guilt.

During my pregnancy there was some concern that Goldie wasn't growing well. I measured small for my dates and had to have another ultrasound. This was the 2nd level II ultrasound for that pregnancy. They were able to get some great pictures of her heart that they didn't get the first time. The tech thought she was in the 50% and would be about 7+ pounds. Maybe if she had hung out another 2 weeks, but instead she was only 6lbs 1oz and 18 inches long. Her head circumference was so small it wasn't on the growth chart.   

I had the quad screen and it came back negative for an elevated risk of having a baby with DS. At the time, I didn't know it only screens your risk level and is not a definitive test. After working with breastfeeding mothers, I wanted to be able to anticipate any feeding difficulties or know if my baby would need extra attention after birth. We thought this test would meet that need. Turns out it didn't.

During my pregnancy I had a feeling that something wasn't right. I couldn't shake it and just kept telling myself it was anxiety. I spent the better part of my pregnancy in funeral homes, so it made sense to me that I was just being over anxious.

If I close my eyes I can still feel the first time I my skin met Goldie's. She was purple and spongy. The only thought I could form was "Why does my daughter have saggy skin like an elephant?" Out loud I said, "What's wrong with her skin. Doesn't she have enough fat on her? Were my dates wrong? Is she too early?" Down syndrome was the furthest thing from my mind.

The nurses kept reassuring me, telling me her Apgars were 8 & 9.

"Really?" the doctor said.

I stopped asking, distracted by the automated blood pressure cuff cutting off the circulation in my arm. My hand would curl into a ball while everyone just stared. I took it off, threw it on the floor and explained they would have to take my blood pressure the old fashioned way. (I'm not a good patient.) It was about this time our friendly nurse, Ann, clammed up. She wouldn't even look make eye contact with me.

Then it was time for Goldie to meet her sisters. Well, one of them, the other one was having a rough time.


I spent the night hiding Goldie under my nightgown, keeping her warm and hoping I could convince her to nurse. Hospitals in my neck of the woods still don't have rooming in. The nurse's aid came twice to bring Goldie to the nursery. No dice lady. Then a nurse who tried to help Goldie latch on. She asked if Goldie looked like my other babies. Finally, she patted me on the back and left.

Morning came and, again, the wanted Goldie in the nursery. This time the pediatrician was there to do the newborn health assesments.
"Great, I want him to come to my room to see my baby," I said.

"We don't do that."

"Ok. Then come get me and I'll bring her to the nursery."

"But, there's other babies in there. No ones ever asked to do this before."

"Your choices are he can check my baby here or I can bring her there. I don't send my 8 yo to the doctor alone. I'm not sending my newborn."

I let Goldie go to the nursery, so I could get a shower before seeing the doctor. But first I called my husband. That was the first time I cried. I planned on going home that evening, so he wasn't rushing in that morning. The plan was to wait until afternoon, then we could all go home together.

So, he wasn't there when I went to the nursery. Goldie wasn't with the other babies. She wasn't swaddled anymore. I could see a little gold bear on her chest to take her temperature, her stomach was bulging out in the center where the muscles didn't come together.

"I'm glad you asked to be here. Is you husband with you?" the doctor asked.

"No."

"I wish he was. Your daughter is showing some of the physical characteristics of Down syndrome."

The words echoed in my head for a few seconds. Then I knew I had to listen very carefully to everything he said because my daughter's health depended on it. The only things I could remember about Down syndrome were that it was an extra chromosome and it was forever.

The doctor and I, mostly I, formed a plan to get some nourishment into Goldie. Then I had to call her daddy. I still feel like crap for giving him such life changing news over the phone.

The next day we got our wish and were able to go home as a family.

It would be a week before we got the results of the bloodwork. A loooong week of crying, swearing, laughing and loving.

Our family pediatrician saw Goldie that day. I requested him that day because he is so compassionate and has a quietness about him that I enjoy. The room was filled with our family of 5, the doctor and at least on medical student.

"The results of the genetic testing came back and they show a triplication of the 21st chromosome."

After converting that to English in my head, I lost it. I bawled. I cried like I have never cried in front of so many people. Including my own children. I wish they hadn't been there. I was still crying when our van pulled out onto the main road. Finally, my husband said something that made me stop.

"You know, she's still our little girl. She's just like any other kid. She's going to take her first steps, say her first words and learn to ride a bike."

"Oh, yeah."

6 comments:

Erin said...

I still have a hard time reading stories like your own because they bring back memories. I too had a anxious pregnancy and a "bad" feeling I couldn't shake. That day over a year ago, that we found out, was the hardest day of my life but it's only gotten better and better since then.

Thank you for sharing.

P said...

KUDOS TO YOU FOR KEEPING THAT BABY WITH YA, that's mom's instincts working overtime and instinctually!!!

Thanks for sharing, we had a risk but no amnio but we were told 90% chance within a few hours. I had no amnio for a reason, we are all here to stay and make peace on earth, finally.

But I know that and understand it more and more every day.

Tracy said...

I am glad to know that I am not the only one who gave a DS diagnosis to a husband on the phone. Ours was prenatal and my husband was out of town when I got the results. It was also his birthday.

Jennifer said...

Thank you for sharing your story. I can't believe you can't room in with your baby! That's crazy, I barely let my babies leave my side. I'm impressed that you found a way to do it.

Mel said...

What a good man your husband is. I have lots to say after reading this post and having a wee cry myself. I blogged about our experience in Jan around the time of Luke's 2nd birthday and found it very healing. In little old NZ there is no nursery in the hospitals (fully publically funded) and there is also no info on bottle feeding- breast feeding is the policy, and skin to skin contact at birth is best practice- you would love it :)
I too was alone when I was given the diagnosis, which is the most alone I think you can feel in the world, and had to tell my husband when he got to the hospital, thinking he was taking us home. There is no easy way to break this kind of news, and I am haunted by the look on his face as I broke his heart. However, two years on, just like when some old boyfriend broke my heart years ago, I am now beginning to wonder what all the fuss was about!
And way to go keeping your baby with you- never get between a mama bear and her baby ;)

Sasha said...

Wow. I can't imagine what it would be like to be in the situation you were in. Mine was different. I had a prenatal dx and new very early on. Not that it was easy either, just different timing. Anyways for me time is healing and gives perspective doesn't it? I am sure you did the best you could at the time and are a great mom to Goldie and that's what matters.