Rosalie’s Birth Story

In June 2012, we learned we were expecting a new member of our family. I got a negative result on a pregnancy test on a Saturday morning, but I knew it may be too early to take a test. I just had a feeling that I was pregnant. We spent that evening at our neighbor’s house & I left before dinner was ready because it was Mary Beth’s bedtime. After I got her tucked in, I searched the kitchen for something to eat. First I had a few vanilla wafers with chocolate cream cheese, healthy I know. Then I went on to eat almost a whole pot of boiled peanuts. I LOVE boiled peanuts, but this was a little much. I sat there & thought,”I can’t believe what I just ate. This is crazy. I KNOW I am pregnant! Who eats vanilla wafers with cream cheese & a gallon of boiled peanuts in one sitting? Only a pregnant woman!” So I got up & took another test. I was SO excited when it was positive!! I knew it!! I immediately called Will to come home. He couldn’t believe it, especially since I had a negative result that morning. But we were having a baby! 🙂

Because of a previous miscarriage, I had my HCG levels checked a few times and once we saw the numbers rising, I started weekly progesterone shots. This pregnancy was so different from my first. I was much more sick & completely exhausted which, with a 1 year old, was tough. But we wanted MB to have a sibling close in age & I knew it would not be easy.

We had our first appointment & ultrasound at 9 weeks, sometime in August. What a relief & a blessing to see & hear that baby’s little heart just beating away! At 15 weeks we had an early gender determination ultrasound. Fully expecting to see a little something between baby’s legs, we were surprised to learn MB would have a little sister, Rosalie!

A few weeks later, we had an ultrasound at my OB office. The ultrasound tech found a “bright spot” on Rosalie’s heart, called an echogenic intracardiac focus. It is a calcium deposit on the heart, a soft marker for Down syndrome. The ultrasound tech put me at ease by telling me she sees it all the time and it turns out to be nothing. Later, I would talk to several friends whose babies had the EIF but did not have Down syndrome. I was not worried. And even if she did have Down syndrome, it didn’t change our love for our child. And I even remember telling my mom the week before Rosalie was born, “After working for Special Olympics Georgia and becoming acquainted with families of athletes with DS, it is not something I am afraid of. God is not going to give us more than we can handle, so honestly, why wouldn’t he give us a child with Down syndrome because I know we could handle it.”

We had a level 2 ultrasound and later met with a specialist who told us Rosalie was fine and she did not suspect that she had Down syndrome. She also ordered an ultrasound at 28 weeks to check growth. I remember telling everyone that I was not worried, but I also remember the relief I felt when the words came out of her mouth, ” Your baby does not have Down syndrome.”

Fast forward a couple months to that 28 week ultrasound: As soon as the ultrasound tech put the thing on my huge belly, she immediately said, “Look at all that hair!! It goes all the way down her neck! And look at that fat roll on her neck!” I immediately thought to myself, “Isn’t a thick neck roll a sign of DS?” (Yes, I know…that is not exactly right. I was thinking about nuchal translucency, which is something totally different, but it still got me thinking about DS.) And then Rosalie sticks out her tongue. And I am talking a Gene Simmons tongue. It was definitely a protruding tongue, another sign of Down syndrome. But I never said anything. And neither did anyone else.

In those last few weeks, my contractions were out of control. I was in so much pain, just about all the time. I made two trips to L&D because the contractions were so strong & so close together with no signs of slowing. The first trip at 2 am on a Saturday morning got me two bags of fluid & two shots of terbutaline which stopped the contractions. The following Monday, they were back and very consistent so I went in again. At this point, my blood pressure and heart rate were too high to get terbutaline, so they gave me some Demerol, which did absolutely nothing, and an Ambien, and I went home and passed out.

And then there was another scan…the 32 week scan. Rosalie’s femur measured small which was a sign of dwarfism or Down syndrome. Ugh. There it is again. Seriously? I’ve already been told that my baby does not have Down syndrome. Do I really need ANOTHER level 2 ultrasound? I also got a progesterone shot to help with the contractions. The OB office called me later and scheduled the level 2 scan for that week & then we would meet with the specialist again that next Tuesday, Jan 15th. On Friday, Jan 11, I remember calling my midwife, Teresa. I was concerned because I was still having contractions. “Come in first thing Monday morning and we will get you on the monitor.” I trust her (& still do) so I stuck it out until Monday.

The next day, Saturday, Jan 12, I helped to host a baby shower for my best friend, Shirin. I was on “modified bed rest” and I was not going to miss my best friend’s baby shower. I had been waiting for the pleasure to host a BABY shower for her, I was absolutely thrilled that her life had brought her to that day – she had finally found the RIGHT man, then received a diagnosis of malignant melanoma, got married, and now she was having a precious baby boy – NO WAY was I missing her baby shower. The shower was held at her church’s fellowship hall. I stood at the counter, helping as much as I could, and a man with a precious little girl on his hip opened the door, looked at me & said, “Is this the Down syndrome support meeting?” Then other parents and children with Down syndrome came in. I remember standing with my friend Jessica who was talking to her friend, Erin, a mother of a child with Down syndrome. As I stood there with them, listening to Erin talk about moving their Down syndrome support meeting to a church classroom, I remember thinking to myself, “I am going to be joining them someday.” A mother’s intuition? It is a powerful thing.

Monday, January 14 – The events of this day are a little blurry

Finally, my mom arrives at my house around 8:15 am to keep Mary Beth while I go to see my midwife, Teresa. I even remember getting in my Suburban and driving down Eager listening to “Springsteen” by Eric Church, and thinking about my “glory days” kinda like the song describes & thinking about how far I’ve come, and how much my priorities have changed since having kids. I remember thinking I would not change a thing. And I still wouldn’t.

I remember sitting on the table in the OB’s office, hooked up to the monitor. The baby was not as reactive as they would like, so I was going to get an ultrasound. I went and sat down to wait for the ultrasound and I was so happy to see the face of a dear friend, Lael. Our husbands are very close friends and she and her husband had just moved back to Valdosta and were expecting their first baby. Then my name was called and I went into the ultrasound room. On the table, the tech started to get concerned as she was looking at Rosalie’s heart. And then I saw it too. There was a large black bubble by her heart & it looked like fluid. She went and got the other ultrasound tech and they thought we needed to do a live feed with the specialist in Atlanta. The second tech left and I started to get cleaned up. I remember fighting back tears and asking the tech, “Am I having a baby today?” Then I called Will’s work when I couldn’t get him on his cell and told him something is wrong & to come straight to the office.

Then I remember the tech taking me to Teresa’s office, but someone was in there, so I sat in another midwife’s office, furiously texting my family and friends, begging for prayers. I was all alone and doing everything in my power to hold it together. God put Lael in the office that day, I know he did. Will works 40 minutes away and I needed someone to lean on until he got there. Lael was the one who was in Teresa’s office & when she came out & walked past the office I was in, I grabbed her, and she stayed with me. Next I remember sitting in the other ultrasound tech’s room with Lael and we were waiting to hear back from the doctor in Atlanta. The tech said, “Your baby was the one with the tongue, right?”

“Yes!” I said. “And isn’t that a sign of Down syndrome? But no one said anything?”

Finally Will got there, Lael left, and Teresa took us into her office, shut the door and said she would be right back. I tried to catch Will up on everything that had transpired. Down syndrome. But that doctor told us the baby did not have Down syndrome, so why are we even talking about it?

The door opens and Teresa comes in.

“You are having a baby today. We think your baby does have Down syndrome. Dr. in Atlanta said that she has seen a lot of babies with DS die in the third trimester, she does not know why, but she believes the baby needs to come out today. Where do you want to have the baby? Do you want to have it here or do you want to go to Atlanta?”

“I want to be in Atlanta.”

But the weather was about to be bad in Atlanta and the doctor would not have any way to monitor me during the 3.5 hour ambulance ride. So the plan was to have Rosalie here and then she would be transported via life flight to Atlanta. The arrangements were made and I finally lost it. I could not take it anymore. I cried hard and loud and I did not care who in that office heard. I was terrified. I was only 33 weeks pregnant. The baby had fluid in her chest. She might have Down syndrome. How much more could I take? Teresa got up, kneeled beside me, held my hand tight, and she just prayed. She prayed for peace, she prayed for safety, she prayed and prayed and prayed. I did not want her to stop. And I know she still hasn’t. I love that woman so much.

We went straight to the hospital. Do not pass go, do not collect $200.

I was in shock. I remember checking in downstairs, my preacher praying with me in the waiting room, being wheeled up to L&D, laying in the bed getting prepped for surgery and my contractions were out of control at that point. Then my parents, Will’s mom, my brother and sister in law, and Caroline came in. And then I was wheeled into the operating room.

A doctor wearing a mask came in as I sat on the operating table. He apologized for the conversation we were about to have, but it was a conversation that was necessary, and he began to ask me what my wishes were in case they had to go to extreme measures to save her, how long did I want them to work on her to save her, did I trust his judgement when he decides there is nothing more he can do to save her. I was certainly not prepared for that.

Then I got the spinal block and they laid me down on the table. I literally thought I was about to die. I started throwing up and I could not breathe. All I could do was stare at the clock and think about Mary Beth and how much she needed her mommy. I could not die. And then the same doctor who delivered me as a baby, walks in the room, stands over my exposed body, and makes a comment about me needing a tan. Any other woman may have been offended, but his comic relief was exactly what I needed right then. I was going to be ok.

I remember hearing Rosalie’s gurgly cry for the first time. Thank you God, her lungs work. Thank you, thank you, thank you. Please let her be okay. Please God, please!

And then something happened that we were told NOT to expect. They asked Will to come over to the baby, and he was able to bring Rosalie to see me and we were able to take a picture. That was huge. We were told that she would be immediately rushed out and we would not see her until we got to Atlanta.

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I remember looking at her. She looked exactly like Mary Beth when she was born. She looked like a beautiful little rosebud. I remember searching for some sign of Down syndrome, but I did not see anything at all. I guess I just assumed that the doctor’s initial statement was correct and she did not have Down syndrome.

After surgery and recovery, I was finally wheeled to my room. I don’t remember much. All I remember is waiting for the neonatologist to come and tell us what was going on. He had told me it would be a few hours before he came to us with any news. Then finally, the door opened, and in walked the doctor with two of the NICU nurses.

The good news was that Rosalie was able to stay in Valdosta and did not have to be transported to Atlanta. The fluid in her chest that we all saw on the ultrasound that morning could no longer be found. Answered prayers.

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And then…”we have to wait for the chromosomal test results to know for sure, but your baby does have several signs of Trisomy 21, Down syndrome…” I just remember laying in that bed, with Will sitting in the chair next to me, and we just sat there, listening and nodding, even smiling at times. All I could hear was “Welcome to Holland,” an essay I was once given a copy of when I worked for Special Olympics Georgia, and that I had passed on to a dear friend whose son was born with DS two years before Rosalie.

WELCOME TO HOLLAND

by
Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”

And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.

But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.

We have been in “Holland” for 11 weeks now, and yes, it IS very special and very lovely. 🙂

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4 Responses to “Rosalie’s Birth Story”

  1. tracy geary July 8, 2014 at 5:55 pm #

    I found myself reading your story a week before I go for my screening test I’m already high risk off ds as I’m 41 , I’m ready for any challenge thrown at me, and your story made need realise that thank you for sharing your thoughts and feelings , and if Holland out s where I end up then I’ll grasp it with both both hands

  2. Sarah Emmerling (Em) October 9, 2015 at 9:47 am #

    What a beautiful piece! You have been on quite the journey. I can only imagine how stressful the pregnancy was, especially with preterm labor. I had that with both of my babies and was on bedrest for weeks. But we didn’t end up in Holland. And btw I love the Welcome to Holland letter! What an elegant way to help parents adjust and accept that they’re not in Italy.

  3. Valerie March 23, 2016 at 4:49 pm #

    This is so beautifully wrote. I’m waiting to hear back from the specialist about my baby boy having spots on his heart. I was looking for answers when I stumbled across this…it’s exactly what I needed:) thank you!

    • sogamom March 24, 2016 at 10:17 am #

      Valerie, thank you so much for your sweet comment. I really need to update my blog but I just cannot find the words to describe the mighty force of love that has swept through our family because of Rosalie who is now 3 years old. She is the most beautiful child and has taught us so much. I wish everyone could have a Rosalie and experience the other-level-love that experience every single day. Every single day!!! Thanks to that extra chromosome. Let me know how you test goes! If it’s positive, it’s normal to grieve, but know that you have truly hit the jackpot. Things will get better. 🙂

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