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."

Hank Louis' Birth Story

This is the fourth, and I'm expecting final, birth story I will write. As I was jotting down the details of Hank's arrival, my daughters were eagerly asking about their own births. I told them that, yes, I had wrote down each of their stories. I can imagine them comparing the stories to those of their own babies some day. (Except my oldest who says she is going to foster/adopt and would prefer not to be pregnant. Watching your mother puke for months on end must have that effect.) This raised some questions of my own. Will Hank, as a man, ever care to read this story? Will I be sharing it with his wife, who will then think I'm one of those natural childbirth freaks? I expect that Goldie will enjoy reading her story. Do I share the whole story with her? How will she feeling reading about the diagnosis and my reaction? Hopefully, I have a few years to think about it. I'm going to trust that the answers to these questions will reveal themselves to me when the time comes. Life has a way of preparing me for what comes next.

Enough touchy-feely stuff, its time for some statistics. Over 4 million babies are born each year in the United States. Hank was one of the 1% that was born outside of a hospital. Of that 1%, only 27.3% are born at a freestanding birth center. He is my only child to not be born at a hospital. I drove 45 minutes each to way to every prenatal visit and took a lot of flak from well meaning family for choosing to have a midwife attended birth. Even my husband was not completely sold on the idea and let everyone know it. He knew that the research supports my position that it would be safer, but still worried about the "what ifs". I could do another post just on the advantages of using a birth center and compare my experiences with 4 different birth attendants.

Now for the good stuff. To save time, I tried to stick to the important parts and didn't add a lot of detail.

Monday, December 28, 2009
3:00 I'm officially 41 weeks, so I need to have an ultrasound and a non-stress test. The ultrasound will measure the amniotic fluid and the NST will listen to the baby's heart and make sure he is moving around.
The ultrasound revealed a nuchal hand (the hand is presenting next to the head) and that he was face down. I wasn't too surprised, he was waving hello to the midwife during an internal at 38 weeks.

5:30 When we get home I fall in the driveway, twice. My husband orders me not to get up until he can help me.

8:30 I start having contractions. I pack Hank Sr's lunch for work that night and get the coffee pot set up for him. I assume the contractions will stop once I lay down. Just like they have for the last 3 weeks.

9:00 I lay down to watch tv with the girls

10:00 I try to get some sleep

11:00 The contractions are getting stronger and keep waking me up. I decide to go upstairs to wake Hank Sr up. It takes me 20 minutes to talk myself off of the couch. Between the fall and the labor, it hurts to move.

11:20 Hank Sr. is up pouring himself some coffee and I'm calling the midwife. Hank calls my mom and stepdad to come watch the girls.

11:45 We head out into a snowstorm to the Midwife Center. This is my 3rd baby born during a snowstorm. I kept asking Hank to slow down because I was afraid we would slide off the road and get stuck.

12:40 We arrived at The Midwife Center. Kathy was the midwife on call and Gretchen was our nurse. In the dark, I could see the lights of the Forest Room waiting for us. Kathy checked me and I was dilated 4cm, then Gretchen listened to the baby's heartbeat.

1:00 Hot tub anyone? I lowered myself into the warm jacuzzi tub and found instant relief. I hadn't been this comfortable in at least a month. Water is a better analgesic than anything I've ever gotten at a hospital. Gretchen brought me an english muffin with pb&j and a glass of gingerale. She continued to check the baby's heart tones, reminded me to drink, and asked if I needed the water warmed up. She also showed my husband how to apply counter-pressure to my back. During a contraction, the midwife asked my husband if I always this quiet when I was in labor. He made some smart remark, I laughed and told her yes. It's true, I was completely silent other than the sound of my breathing.

2:00 The contractions got much stronger and the baby moved down even further. We decided it was time to get out of the tub. I paced the room, leaning on my husband during contractions. I tried leaning on the birthing ball and began to feel some pressure. I wasn't ready to push, but started feeling antsy.

2:15 I asked Kathy to check me again. I had reached 7cm  I knew from my previous births that if she broke my water I'd be holding my son within 20 minutes.

2:17 I decided that 41 weeks was long enough and asked the midwife to break my water. As I had anticipated, the contractions were overwhelming. Everyone kept reminding me how great I was doing and that it wouldn't be much longer. Laying on my side, I began pushing when I felt ready. I really wanted this to be over, so I didn't stop pushing until they reminded me to breathe. I know it didn't hurt this much with other babies.

2:32 I pulled Hank Louis up onto my chest and he raised his head to look at me. His daddy and I looked at each other with mutual joy and disbelief.  In 15 minutes I went from 7 cm to holding my baby boy! Kathy explained that he was born with his hand next to his head, so I'd be a little sore this time.

We spent the next hour chatting while Hank nursed. I now know what the expression "born to breastfeed" really means.  The cord stopped pulsing and his daddy got to cut it.
He weighed in at 7pounds 11oz and was 20 1/4" long. Gretchen cooked a breakfast of eggs and toast for us then left us to get some rest. Of course we couldn't sleep, but we did enjoy an nice snuggle, just the three of us. I've know that you can't always get what you want in life, but this time I did. Hank was blessed with a birth that went just as his mama had planned.

Goldie's birth story

The contractions started on the evening of Saturday, March 10th. I went to bed at 11 hoping they would just go away. I didn’t feel ready yet. I woke up at 1:15 am have strong contractions every 10-15 minutes. I woke Hank up and walked around the house. At 2 am they were closer together. We decided to go to the hospital. Swatcho was born very quickly without painful regular contractions. (please don’t hate me she made up for it later) Hank's mom came to stay with the girls.

We get to the hospital and find out I’m only dilated 2cm so we can go home. Yes! But, while we’re hanging out there they decided I needed to watch some videos. One is about shaken baby syndrome the other is about c-sections. We started to watch the first one, then I said “eff this” and shut the TV off. Since when does childbirth come with required viewing material?

I was having a lot of back labor and the contractions were pretty uncomfortable so I didn’t rest much even when we got home. By lunchtime on Sunday they were 15-30 minutes apart. At this point, I was still in denial about being in labor. I thought I had another 2 weeks to go and that the contractions would just dwindle away and I could go on being pregnant. This is strange because at this point in my other pregnancies I wanted to be done. But, this time, mentally I wasn’t ready for her to be born and couldn’t put my finger on the reason why.

Around 2pm my labor picked up again. These contractions were more intense and I needed to find some pain relief. I got in a warm bath and was able to relax. The sweetest part is that Swatcho stayed by my side the entire time. Hank was downstairs “nesting” by hanging new trim in the living room. After getting out of the tub I took a nap in Mini Me's bedroom. Swatcho played next to the bed while I rested.

I think it was around 5 pm when I went downstairs. I may have gotten something to eat. I have this huge fear of going to the hospital and being denied food and then being hungry after the baby is born, but the kitchen is closed. (Oh wait, that happened to me once, when Mini Me was born)

Anyway, I was on my knees with my head on the couch trying to deal with the pain. I ask Hank to come help by rubbing my back. He says “hold on, let me finish nailing this up” Um, NO! That was when we went to the hospital, because he would have to focus on me there.

Now, I’m at 6 cm. I have to admit I was a little disappointed, in 15 hours I dilated 4 cm. My OB gets there an hour later and I’m still 6 cm. She says she’s going to break my water. So, I clamp my legs together and tell her “No, we talked about this. I don’t want my water broken.” She says “Yes, you’re still at 6 blah blah blah I don’t think it will cause you to be in more pain blah blah blah.” Then I cave and say “o.k.”

Well, I immediately was in tremendous pain and started asking for drugs. The wonderful nurse tried to talk me out of it. Then said she would just give me a little bit because she really thought I could make it without anything. Looking back, I know I was in transition, but at the time I thought it was too soon. Now it’s been less than 10 minutes since the OB broke my water and I feel the urge to push. (I just went from 6 cm to 10 cm in like 8 minutes!) Then I can feel Goldie crowning and I tell them I need to push. The OB says “don’t let her push, she can’t be dilated enough,” I yell “it’s too late” Then she lifts up the sheet and says, “oh, yeah, well go ahead then” A couple pushes later Golden Marie joined our lives in a new way.

The first thing they notice is her short umbilical cord. They had to cut it before I could hold her. They laid her on my stomach. She was just screaming and kicking with black hair just like her sisters as babies. But, I noticed right away her skin was saggy. Her knees were baggy like an elephant. I asked them why and no one answered. They weighed her and did her apgar scores. Goldie was 6 lbs 1 oz and 18 inches long; much smaller than my other two. Her apgars were 8 and 10; this made me feel better.

While the OB is delivering the placenta she remarks on how quickly everything went. I remind her that I told her not to break my water.





Afterwards, while I’m holding her again, my right hand keeps going numb and contracting in toward my arm. The blood pressure cuff would tighten and this would happen over and over. I kept telling the nurse and all they did was stare at my arm. So, finally I throw the blood pressure cuff on the floor and tell them they will have to take my bp the old fashioned way. The nurse isn’t making eye contact with me anymore and she’s biting her lip. I figure I must have pissed her off.



I try nursing Goldie for the first time, but she doesn’t seem interested. Hank takes a picture of me trying to feed her anyway. I figure, no big deal, Swatcho wouldn’t nurse right after she was born either.

They take Goldie to the nursery for footprints and I make Hank follow them. The nurse helps me get a shower, but she’s very quiet now. My OB is gone.

Goldie comes back with her Daddy and gets to meet her sisters, grandparents, aunts and uncles.



As I type this I realize I still have a lot of emotions surrounding Goldie's birth. Mother's intuition is strong and I could tell something was not right after she was born. It kept me from relaxing and enjoying the moment. I just realized I have no pictures of us as a family from that night or of Hank with his newest daughter. I want to look back on it as a joyous time, but I still feel all the uncertainty. Maybe I should stop now and post the heavy stuff another time.