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."

Goldie the Big Little Middle Sister

Her sisters call her the Little Middle Sister, but she is also one of Hank's big sisters. I think she loves all her sisterly roles. Goldie is almost always nice to Hank. We just have to watch because she will try to take care of him beyond what she is capable of. And I say "almost always nice" because there was the one day she dumped a glass of cold water on his head while he was sleeping. (Baptism - check.) Hey, it works to get rid of the cat.


So here are some pics I took this month of our Goldie girl.

Those are Hank's binkies in her mouth. I just wash them when she puts them down. I figure if we make a big deal out of it, she will too.

The Brady Bunch

Goldie is all about the Brady Bunch. It started when I discovered that my girls had never met Mike and Carol, I immediately added Season 1 to our Netflix account. How could I know what a monster I was creating? Goldie, who would never watch anything other than Signing Time, sat for 1 1/2 hours watching the blended family bliss. The only word out of her mouth the entire time was "Alice". Everytime the credits roll she yells "Alice" and hits her head (ASL for "lettuce").  She began requesting "Alice" so much that I went out and bought her Season 1 and 2 for her birthday just so Netflix could have their DVD back. Finally, something we can all watch together.

Is it painfully obvious that we don't have cable or a dish?

And if you think Alice = lettuce is cute.
Bicycle = popsicle is almost as amusing.

Her sisters think the best part is when she starts dropping the "L" in Alice. Then you get A iss. So, its best to put her show on right away before she starts "swearing" at you!

Some problems are good to have

The statement "That's a good problem to have." gets thrown around a lot here. Mostly by me and sometimes my husband. Its our way of looking at the glass as half full overflowing. Here's an example.

I love blogging. I have a lot to write about lately. I loathe typing with one hand. The baby is always in the other. This is a good problem to have. I am so smitten with this little guy. Why didn't someone tell me boys were so charming?

Even when he's telling Grandma to back off.

Even my girls are starting to get the meaning of what a good problem is.

Me: Everyone is talking me to at one time, so I can't understand any of you. You're talking and you're talking, Goldie is yelling at me and Hank is crying to be held.

8yo: That's because we all love you!

Me: Oh, yeah, good problem to have, huh.

Kids: ~~~~laughter~~~~

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.

Good things come to those who wait!

Here he is!



Baby Hank arrived on Dec 29th at 2:32 AM. He weighed 7lbs 11oz and is 20 1/4" long. Not the peanut we thought he was. Everything went as planned and he is doing fabulous. His big sisters are always holding him and Goldie warms up a little more to him each day. She doesn't seem very jealous, just a little hesitant. I'm taking my job of resting very seriously and soaking up every minute with my 4th baby that I can!

The Real Me

Tricia at Unringing the Bell tagged all her readers for this, and since Goldie and I are big Georgia fans we obliged. So if you've ever wonder what it would look like if you could see me while I'm reading your blog? Here it is:

This is our bedtime routine. I can take lazy to a whole new level. Seriously, I'm having a pretty good night. The kids are in bed (maybe not their own, but A bed), laundry turning in the dryer and washer, Cream of Wheat in the crockpot for breakfast, dishwasher is running, chicken eggs collected and the animals are fed. I wish everyday could go so smoothly.

The "R" Word

I was hanging out with the girls tonight when Mini Me told me about something that happened at school today. One of the girls was "teaching" the other kids how to hit themselves in the chest with their hand while saying retard. I don't think I've seen that move since I was in grade school. I explained why it was wrong and got online with her to show her the shirts Lisa at Finnian's Journey and her son made. But, I was pleasantly surprised to find Lisa's recent post.

Just like Lisa, I'm shocked at the girl who initiated this. You see, her parents are leaders at the Vacation Bible School my girls attend every summer. When I pick them up, her dad is always up there singing with the kids. On the other hand, Hank only goes to church at Christmas and Easter. He's also a truck driver and has a mouth like one. Sorry, but its true, as the daughter of a sailor this didn't phase me when I met him. The irony of this is not lost on me. Now, I also know as a parent sometimes our children do things that do not reflect our values. My children have come home and told me some awful things that were said by their grandparents. I'm just glad they knew what they were hearing is wrong and not to repeat it.

Oh, and if you want to read more posts about the "R" word Joyce had something to say, too.

I'm hoping Mini Me will be inspired by Lisa's blog and stand up to the kids at school. But, I don't think it will happen tomorrow. She still feels like "the new kid" and is pretty shy. I'm wondering if I talked to the guidance counselor if she has a lesson that would be appropriate for this situation. I don't want to see kids get in trouble, I want them to learn why using the "R" word is wrong. I want them to know the people they are hurting and be able to empathize with them. I have a chance to volunteer at the school next month. Maybe it wouldn't be a bad idea to go and bring Goldie with me.

25 Things About Me

I was tagged for this on Facebook, so here it is. I changed some just so I don't seem too lazy.

1. I married my husband exactly one week after my 21st birthday. We’ve been married 12 years now.

2. My favorite color to wear is brown, I liked it way before it was cool. I’m stocking up on brown shirts now.

3. I’m addicted to Café Vienna, one of the General Food International coffees

4. I had post-partum depression after Goldie was born. I finally got help when she was 8 months old. I think it had more to do with losing 3 family members than it did with the DS.

5. In the last 10 years there have only been two months that I wasn’t pregnant or breastfeeding.

6. During those 2 months I got completely trashed at a wedding and am still embarrassed by my behavior.

7. When we decided to have a third child, we were thinking with our hearts not our heads. It’s a good thing, since my heart does most of the work.

8. I spent 6 months in the United States Marine Corps, until I fractured my pelvic bone.

9. I’ve stopped trying to have the perfect marriage. We do what works for us and I’m happy with that.

10. I was late for church this morning. Even worse, I only went because Swatcho made me. Then, she complained through the entire service while Goldie kept trying to escape.

11. Half of my family lives in Vermont, my mom is from there. I also have family in Mississippi and Texas that I have never met.

12. I enjoy mowing the grass because it’s a sure fire way to get time to myself.

13. I shot my neighbor’s dog in self-defense. No it didn’t die. Yes, I called the Dog Officer, 6 times.

14. I’ve been thinking about getting another tattoo.

15. I never got a college degree. Sometimes that bothers me, but that also means its still an option.

16. Ever since my Jr. High music teacher had us watch My Fair Lady, I’ve been a fan of musicals. My husband is not. Thank goodness I have girls.

17. I love hanging clothes outside to dry.

18. I worked for as a mail carrier between Swatcho and Goldie. Sometimes, when it’s nice out, I miss delivering mail. It was so nice to drive around by myself listening to the radio.

19. If you haven’t figured it out yet, I like to be alone. I’m an introvert; my husband thinks I’m a bitch antisocial. It just depends on the situation.

20. I get migraines from red wine and aspartame.

21. I love cinnamon and dark chocolate.

22. I’m an information junkie. I question everything and research like crazy before making decisions.

23. All the stuff I need to know to care for a child with special needs overwhelms me. Sometimes, I think maybe ignorance really is bliss.

24. I always knew I would have a child with special needs. When I found out Goldie had Down syndrome, in a strange way, it felt right. Everything in my life had led to that moment and prepared me to be her mother.

25. I suck at putting my kids to bed. Goldie is sleeping in the recliner right now, and the other two slept in the living room all weekend.

Me on my 30th birthday with Swatcho and her friend.

Sisters Rock

Its moments like these I wish I had a sister growing up. I never felt that way until I had kids. I often think how nice it would be to if I could pick up the phone and have a sister to call. I've had some friends that come close though. And my brother is the best so I'm lucky there, too. I hope my girls always stay close.

Christmas Eve Two Years Ago

I was 7 months pregnant with Goldie. Hank (cute nickname for hubby) and I decided to buck tradition and have Christmas Eve at our house. It would be the last day I spent with my Grandma. She died of a brain tumor a month later. But that night she was the smart, witty woman I had known all my life. She bought my girls some fun gifts and had a wonderful time watching her great-granddaughters enjoying them.






Goldie was born 4 weeks after my Grandma died. I did not see her before she died. I will always regret that. I should have followed my heart and not listened to the advice of others. However, I have no regrets about her life. I always made to time to stop and visit with her. My mom's family lives in Vermont, so she was the only Grandma I had growing up.

There is a sad irony in her passing before Goldie was born. Grandma had 3 boys. I have 3 girls. Her youngest sustained brain damage at birth. She was the mother of a special needs child before the term even existed. Before Early Intervention. She drove across Pennsylvania twice a year for his therapies. She told me about her experiences, but it never really hit home until Goldie was born. The one person who KNEW what I was going through was gone...

I cried a lot after Goldie's diagnosis. I could handle my daughter having Down Syndrome, but I couldn't fathom this journey without my Grandma. I've come a long way since those dark days. Here is a picture of her with my uncle and Swatcho (nickname for my middle dd).