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."

Overwhelmed No More

I've spent the last week trying to get a handle on our home and my time. Over the last year I've felt increasingly overwhelmed by the day-to-day stuff that needs done around here. So, on Saturday I handed over a volunteer job to someone better able to handle it. This is something I should have done a looong time ago. Like, after Goldie was born.

I have to come clean and admit thinking to myself after she was born, "I'm not going to change. I'm not going to let Down syndrome take over my life. I'm still going to do everything I did before. I won't become obsessed with it." Its taken me 2 1/2 years to admit that I have changed, my life and interests have changed and its not as bad as I thought it would be. Down syndrome didn't take over my life, but my love for Goldie has. She demands more of my time than I anticipated in the beginning, but who can think of a better way to spend their time.

The volunteer work I did was bookkeeping. Which is best done without the help of a 2 year old. I tried waiting until she was asleep, but she would wake up constantly and I still didn't get anything done. The bookkeeping kept getting further behind and my guilt kept growing. I put off doing crafts and projects around the house because I felt like I should be getting caught up on the work I was already committed to. I ended up getting nothing done for myself, my family, or the charity. Which led to more guilt.

Now that I've relinquished my duties, my time is once again my own. Like Hank said, "Now all you have to do is take care of the kids." Yep, that's it. HA! HA! But really, I've been planning field trips for them and organizing their rooms. I'm good at organizing when I'm pregnant!

Totally unrelated to this post, but when I was looking at my calendar, I saw that Goldie's first transition meeting is next week. Eeek! I don't feel ready for this process.

Summer Sickies

I have been sick for an entire week now with bronchitis. I hate taking medicine when I'm pregnant, but my midwife doesn't want it turning into pneumonia. I figured it would be better to take some mild OTC stuff now than get really sick and have to take more potent drugs later. I don't know where I got this because the rest of my family seems completely healthy. Unless, you count Goldie's weird eye infection. It's not pink eye and is doing much better now that she is also on antibiotics. So, we're going to finish our weekend of trying to rest and get better. Her surgery is in less than two weeks and I want her to stay healthy! I'm stocking up on popsicles and applesauce.

Getting better

The morning sickness is somewhat better. It improves throughout the day. I had my first appointment with the midwife and she suggested trying Unisom and a time released B vitamin. I haven't tried it yet, I'm afraid it will make me mroe tired and I don't need that.

Goldie had a sore throat and fever last week. How do I know her throat was sore? Her sisters both had it first and were over it in 48 hours. So, when Goldie woke up with a fever I knew she had the same virus. Too bad it took her almost 5 days to get better.

Then I came down with a head cold and I think Goldie is next. She sounds a little stuffy. Sorry this isn't a more uplifting post!

Did you know morning sickness is contagious? Yep, my kids seem to spend as much time laying on the couch as I do now. Maybe more. Goldie now walks over to the toilet and spits in it. Then she looks up at me and laughs. She's definitely the bright spot in my days.

Just a Mom

We have a little grocery store near our house, they sell all kinds of plants outside and fresh produce inside. They also carry a great selection of locally made goods. Its been 2 years since they moved "out here" and I still love the convenience. I stop at least once a week for fruit, veggies, and sandwich fixins.

Saturday was a very busy day. It took longer than usual to do our shopping, but that was because I got sidetracked talking to the man selling fudge. Turns out he grew up on the same street as my dad.

Goldie was sitting in the cart whil I tried to get us out of the store, past all the people looking at plants. I stopped to wait for another cart to move. That's when a woman, maybe a little younger than me, came towards me and said "My daughter has..."

Now in a split second my head finished the sentance with "Down syndrome, too."

But what she finished saying was "My daughter has the same outfit."

Me: "Oh, yeah. We love it, she's growing out of it, so I try to put it on her as much as I can."

She looked at Goldie and we continued to chat about clothes and how busy the store was. It was a very quick conversation. She never asked how old Goldie is, is she walking, is she talking, or any of the other questions I get so often when people think something isn't "right". For once, I was just a mom, who likes pink and brown, who has 3 girls, who needed food for lunches, and forgot to buy milk.

Happy Mother's Day!!

New Life

I've been marveling at the new life spring has brought to our home and property this year. Goldie's tulips bloomed again. They weren't as eye catching as the first year, but I still enjoyed them.

Hank bought me blackberry, raspberry, and blueberry bushes for Easter. We planted them where the chicken coop was last year. The soil there should be nice and fertile.

The asparagus I planted last year is coming up! I love asparagus and now we will be able to eat it from our own garden! Hank was laughing at how excited I got over seeing the first skinny shoots.

Two weeks ago I planted half of the garden. (The half Hank didn't dump clumps of cow manure on.) I planted lettuce, cabbage, onions, and sugar snap peas. They will all do well if we get another frost. I'll plant more after Mother's Day.



We surprised everyone with the news this week that Goldie is going to be a big sister! It looks like the girls will be getting a new sibling for Christmas. I couldn't have planned that if I tried. Not that we were trying or planning. I admit to crying a few frightened tears. Goldie is still nursing a lot and doesn't sleep for sh*** at night. Because of Hank's work I'm on my own when it comes to nighttime parenting. (It just wouldn't be good to have a sleep deprived, gasoline tanker truck driver cruising the roads.) So, this means I have to get my act together and figure out how to help her sleep better on her own. We have an ENT appointment this month and plans to rearrange the girl's bedrooms. Any gentle parenting ideas are welcome. (We don't CIO.)

The girls are excited. They are hoping for a brother. I explained that I don't think those odds are very good. I'm so happy that Goldie will have a sibling close in age to her. Out of all 4 children, these 2 will be closest in age. Most of our friends and family are happy for us. But, there's always that one person who has to see the dark side of everything. It's a shame, really. I'm looking forward to seeing our family grow. I grew up with only 2 cousins that live 600 miles away. I always wished for a bigger family, especially around the holidays. I missed having kids to draw, sing, or play dolls with. As an adult,that has become my wish for my kids. We can't give them cousins, but we can give them each other. I just hope that whatever life brings their way, our children are able to go through it together.

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.

Taking care of Me.

This week I actually spent some time doing things for myself. Imagine that.

My favorite thing to do is get my hair cut. Well, I took it a step further and had it colored, too. I'm not ready to deal with the gray. I don't know why. Generally, I'm very low maintenance. I don't wear nail polish. ever. I seldom wear makeup. But, my hair, I love getting my hair done.

I walked twice this week. One day I even made it to the neighbor's to see my future son-in-law. :) He is doing great since his heart surgery and is now off all medication. Can I just tell you how sweet it was to hold him and check out his cute little fingers and toes? His mama is also completely in love with him. The next day I walked with my another neighbor. I admitted to her that I am over this whole DS thing. Not in the good, I'm ok with it way. I'm talking about the I'm sick and tired of therapists and milestones kinda way. Sooo...

Today, Hank and I left the girls with my mom and headed to Amish country. I called the OT in the morning and told her she would be meeting Goldie and her grandma. It felt so liberating. I have been present and participated in every therapy session for 2 years. I think a day off was in order, don't you?

The plan was to go to Volant, PA and get Goldie more of her popcorn that she loves and look for bar stools and bunk beds. I'd been to the town of Volant before, but had never seen the surrounding community (or I would have brought my camera). Seeing the little girl in her purple dress hanging clothes, the boy about 7 years old pumping water from a well and farmer after farmer plowing his fields with horses, not tractors made me long for a simpler life. My kids will be lucky if I don't throw out every piece of plastic along with all the Hannah Montana crap in the trash tonight. Also, I love the way they tie the corn stalks up like little teepees, just like in the Little House books. I felt like such a tourist, even though I wasn't that far from home. We stopped at an Amish farm with a quilt shop and bought a gift for my mom and a bonnet for the girls. The kind woman who owned the shop gave us directions to a furniture maker. His shop is going to make us bar stools for a very reasonable price and we may put money down for bunk beds when we go back. They had catalogs from their suppliers they showed us so we could choose what kind of backs and spindles we wanted on the chairs. So, they order their materials just like any furniture maker would. I guess I had this vision of them hand carving spindles or something.

Goldie is out of luck, I couldn't find her special popcorn. I'll probably order it online, the shipping is less than what we spent on gas today. It was such a peaceful day. Hank pointed out that we haven't spent that much time alone together in years. Sad, I know. Getting away for the day really makes me evaluate what I need to focus on. I don't want to be Amish, but I want the simplicity. I know my life was simpler before DS set up camp in my living room. I want to get that back, without neglecting Goldie's (or anyone else's) needs. IFSP is coming up. I have to decide how much of what she's going to get. Hmmmm.

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.

Thanks

Thanks so much for all the support after my last post. I have a meeting next week at Mini Me's school. I can't help but think this is life's way of preparing me for the road ahead.

I can't believe its midnight. Slacker Mom has nothing for V-day for anyone in this house. Ugh. Last year I made the kids "love bucks", homemade coupons they could redeem for things like an extra bed time story, playing a game, a foot rub, etc... Looks like I better get crackin.

Special Needs Family

Technically speaking Goldie is the first and only member of my immediate family diagnosed with a syndrome that puts her in the special needs category. Since she was born, I've thought to myself MANY times that we all have special needs. Spending time with a variety of therapists who let me pick their brains has confirmed this.

Lets start with Hank and Swatcho. I'm convinced they both have ADHD. I'm sure its genetic because his mom and grandfather exhibit the same traits.(If you know anyone doing a study give us a call) Hank is physically unable to sit still. I have no idea how he made it through school. He says he paid people to do his homework so he could work after school. Then,there are the times he goes completely overboard. For example, he went to buy seeds for our garden last year. We only needed some pumpkin and green pepper seeds. He spent $80! WTH? I was only able to talk him into returning $40 worth. I only send him to the store as a last resort now.

Swatcho has been on the move as long as I can remember. Or not, because I don't actually remember her first steps. They were early and it was just the beginning of many trips to the ER. Broken leg 18 months, split chin 2yrs, stitches in big toe at 2 1/2yrs, and broken arm when she was 5. The arm was fun. She had to go to PT twice a week and we had therapists coming to the house for Goldie.I freak out now anytime she does anything remotely dangerous looking. Swatcho is also my sensory seeking child. She loves jumping, spinning, swinging, bike riding, etc...

So for a while I thought Mini Me was the "typical" one. But, alas, no such luck. I'll spare you all the details today, but let's just say she can't follow directions. I've tried everything. I realized it was a problem when I saw it impacting her school work. She knows the material, but can't remember the steps to complete a problem or answer a test question. One of her teachers has developed a low perception of her because of this. (thats a whole nuther post)

Hank came home today and said he thinks I should look into Executive Function Disorder. Yup, that's my girl. And she probably got it from me. But, when we were kids expectations were lower. I didn't have the amount of stuff to keep track of that she does, and I mean both toys and school work. I can also see why I have always kept our schedule so open. Too many things on the calendar and I get overwhelmed. There are weeks I think the whole therapist thing is going to put me over the edge. I'm thankful for them, but at the same time just want to be done with it already.

So there it is. Now, how do I organize our home lives so everyone's needs are met? Do I pursue a formal diasnosis for any of this or just implement strategies to help them be successful? I've started by boxing up some of Mini Me's toys and 2 bags of clothes. She had the idea that she could trade items so she doesn't have too much stuff out at once. I also do this with Goldie's toys to cut down on the mess.

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.