Friday, July 12, 2013

The Rest of The Story

My original birth story for Ruby told of the picture-perfect labor and the amazing delivery. What it didn't tell was the overly emotional and gut-check kind of day we had after she arrived. I've started and stopped this chapter of the story more times than I can count. I've rewritten over and over because I worried it portrayed Lehr and I as not faithful enough, as weak, as naive, as ungrateful, as fragile...the list goes on. In the end, I realized that those things, those truths are what makes it the real story. So the nitty gritty is what I ended up with. I think our story still paints us in those lights, but I've come to realize that it's ok because that is the reality of the story. And even though I've thought about editing this post until it's grammatically correct, until it's all in the correct verb tense, until it's polished, that's not how it happened...nothing that went through my head, through my heart, those hospital days was polished. So here goes....the good, the bad, the ugly....
As imperfect as being induced three weeks early might sound, it actually was perfect. The midwife I saw the day before Ruby was born told me to go home, pack and head to the hospital that night because they'd start induction in the morning. That gave me time (without being distracted by actually being in labor) to get my kids taken care of, fly my mom in early, repack my bag, and drive calmly to the hospital with Lehr. Although I didn't sleep a lot, it also allowed for one full night of rest before labor started. And even then, once it was time to get things started, my midwife and labor nurse were incredibly receptive to everything I wanted to do (basically avoid all drugs, even the kind that help labor progress when you're inducing). With the help of my doula, I was able to keep things moving at the pace I chose, labor progressed quickly, but not *too* quickly, Lehr and I worked well together through the pain and we were presented with a beautiful baby girl at the end of it who nursed right on and so forth down the road of exactly how I planned it. You don't hear about a picture perfect labor/delivery like that because it just doesn't happen very often.

When Ruby was born, I got to hold her for a long time while she nursed on and off. Then Lehr held her, then the doula, repeat repeat. Finally one of the baby nurses took her over to the bed-baker (it has a heat lamp on it, for crying out loud) where they cleaned her off a little, did a few preliminary checks, etc. In that time we found out her weight and were informed that they couldn't bathe her until her blood sugar was at a certain number (due to her being early). No problem. They stuck her heel and it was low, so they fed her some formula and tried again. Still a little too low, so they finished a few more things and wheeled her away to the nursery to clean her off without a sponge bath. Very standard so far. They assured me they'd bring her right back once I arrived in my next room.

My mom and the kids arrived minutes after they wheeled Ruby out of my room, so they hung out until a wheelchair was brought for me to be transported to my 'recovery' room. We all went upstairs and got settled in. Almost an hour later and still no Ruby, so Lehr walked my mom and the kids down the hall to peek in the nursery. They got to see her through the windows there, but that was as close as they could get. Almost another hour passed before I finally sent them all home. In that time they got to see Ruby through the glass three or four times, giving me reports of how cute she was, that she was sleeping, that all of the nurses were looking at her and checking up on her. In that time, those two-ish hours, I started to get nervous. Something was not right because if it was, she'd be back in the room with me. I think I told my mom to take the kids and go home several times before she finally did. I knew she and the kids really wanted to meet their baby sister, but my anxiety over why Ruby was still in the nursery was rising.

As it turned out, they left just in time. Not 30 minutes later a nurse came in, wheeling Ruby, and told me that they noticed a few things during their further exams (mainly 'floppiness' and hair falling out) that indicated neurological issues, so Ruby was going up to Transition (kind of like a stop-off to figure out if the NICU is needed or not) to be checked out by some doctors. She was very blase about it, but the word 'neurological' got my attention. I asked if Lehr could go with Ruby and the nurse said he could, but he'd be in the waiting room. Then she asked if I wanted to say 'good-bye' first. Another attention-grabber for me. I hugged my baby and kissed her before Lehr, calm, cool and collected, followed the bassinet out of my room.

Then I'm alone, hormones from giving birth not five hours prior surging, worrying about where Ruby is and what the doctors could be looking for. Trying to calm myself, I grabbed my camera and started flipping through the pictures Lehr and I took just after she was born. And then I saw it...just a hint of something, only noticeable in a few pictures. Not sure if I was really seeing something, not entirely sure of what the something was, I deleted a few of them, trying to tell myself that it was the camera angle or the bad hospital lighting. More time passed and now I have to, HAVE TO, see my baby. She has been away from me for over three hours except for her drive-by on the way to Transition. I need to hold her NOW. And I'm worried about how Ruby's eating also. I don't want them to give her any more formula so I page my nurse and ask for a pump. I produce enough to bottle and then ask if someone can take me up to Lehr and Ruby.

It takes forever to figure out where she is, but finally they wheel me up. Lehr is sitting in a small waiting room with a few others. On one wall are two doors and a few small windows. After I ask Lehr if he's heard anything, I walk over to the window and see her, peacefully lying in an exam bassinet, arms and legs stretched out. She is so small and so limp. I start to cry immediately. Lehr reassures me that everything is fine, but I know. I just know.

What seems like an hour later, but was probably only minutes later, someone gets us from the window and takes us through one of the doors. They bring us to Ruby and a doctor who spoke way too fast and without any warning or bedside manner. He informs us that our baby shows many of the signs of having Down syndrome, and immediately the room is spinning and I'm sobbing. Without taking a breath, he continues to talk.....something short and fast: "The chromosome tests won't be back for a week but I don't want to give you false hope that the diagnosis will change...Here's a book...Emory has a great clinic here in town...Do you have any questions?".

Now I'm shaking and crying, Lehr is shaking and asks the doctor if he can just give us a minute to process. Somehow there are chairs behind us now and we're sitting, crying, trying to comfort each other even though we can't comfort ourselves. My mind was going a million miles a minute. What did this mean for Ruby? Would she talk? Go to school? Have friends? What about our family? We have everything 'in place'...what would this diagnosis do to our organized chaos? Maybe they were wrong...the tests wouldn't be back for another week...what if they were mistaken in their original assessment? I can't do this....can we do this? Working with Eli's feet is already so taxing and this will be so much can we possibly do this? How would the kids react? How would our family react? Will they know as soon as they see her? What if they don' do we tell them? What do we tell them?

Why? Please let it be something else...something I can fix. Something I can identify with. Something I can handle.

Why me? I was only 35 when I got pregnant...I know plenty of moms older than me and none of them have had to face this. Why me? Why her? Why us? The questions kept coming and I couldn't slow them down....

Remember how I said that I knew? Well that didn't matter, because hearing something you think you may have learned in the last hour, but was so unbelievably unexpected only a day before still hits you like a ton of bricks. It drops the floor of security out from under you faster than you can imagine. We were both blind sighted in a way so incomparable to anything we'd experienced before. I don't know how long we sat there reeling from the news, but finally they let me hold her and we showered her with tears and kisses. When I had Ruby in my arms, none of it mattered. She was so beautiful, so seemed ridiculous that they were telling us anything was wrong.

Eventually they had us put her back in her bassinet; they told us to go back to our room and they'd bring her to us because she'd been checked out by the doctors and she didn't need to stay in Transition any longer. We took the elevator back to our room with stony faces, numb to everything around us.

We had barely set foot inside of the recovery room when there was a knock at the door. The OB on-call (the same one that had come in to say 'hi' just that morning as I started my labor) asked if he could come in and talk. I guess I said 'yes' because the next thing I know, he is sitting at the foot of my bed, saying all of the right things. He was extremely un-doctor-like (in a very awesome way) in his demeanor, tone, and personal attention. I can't remember any of the specific words he used, but he reassured us and calmed us, and even put us in contact with friends of his that had 'been there, done that'. And once he was done (which was probably not for another 30 minutes - he was that amazing!), they brought Ruby back to us. With that brought more tears, more confusion, more fear.

I fed Ruby and eventually sent her back to the nursery so I could get a little sleep. I was doubting everything at this time, especially my ability to care for a baby with such a big diagnosis. If she was in the nursery, even if only for a few hours, that's a few hours that I knew she'd be safe and watched over by a trained eye. I don't even know what to be watching for...

Lehr and I are both exhausted so we both try to sleep. All night, in and out of a few feedings, I toss and turn, waking up only to have grief and sadness wash over me again. I can't get away from it. But when I feed her, when I'm holding her, everything is fine. She is perfect. But I still study her face. In my state of fatigue and being emotionally beat-down, I try to convince myself again that maybe they're wrong. I can't always see 'it' in her face....wouldn't 'it' be more obvious? Wouldn't I be able to see 'it' all of the time? All I see when I look at her is Maddux and Eli. And Ruby.

But when they take her back to the nursery, I am left alone with the questions and fear. So much fear. I lie back down and try to sleep but my brain won't shut off...the questions, the scenarios, they keep coming. The noise in my head is deafening. What does this mean for the many friends of ours that are trying to have a baby? What does this mean for our kids? How will Ruby do in school? What if she can't make friends? How can I help her fit in when everyone will see something different about her when they meet her?

And then there is the really selfish stuff. The stuff that's hard to admit even crossed my mind.

I'd just gotten MY life in a good place with two side jobs that were my passion...what would I do now? *Just* be a mom? What about boot camp? What about my photography? I'd finally figured out how to be a mom and work without taking time/energy away from my family...what now? And what about Lehr and I? We just had an amazing year of being a couple, one full of us-time and dates and a few trips...was that all behind us now? Would we ever be able to leave for a weekend away again? Would it ever be 'Cole and Lehr' again?

I've never been one to put a lot of stock in recounts of people experiencing an actual physical presence of God, probably because I'd never experienced it myself. But I honestly had one of those moments during one of the noisiest times that night. I was lying on my side, trying to shut my brain off, trying to quiet the questions, trying to calm the fears and I felt hands gently cover my ears. It was one the most bizarre things I've ever felt, but it was definitely real. And with those hands came a quiet. A calmness. (BTW - That was just one of many God moments throughout our first 48-hours post-diagnosis...we had so many more!)

Finally the morning came and with it many more waves of tears. For a few moments when I first woke up, I hoped that someone would come in and tell me that they'd done further tests overnight and found out that they were wrong. But those were fleeting hopes because I knew. Just like I did before I really knew.

The kids and my mom planned to return in the morning, along with two friends we'd confided in via text the night before. I tried to prepare myself for that, but what I wasn't prepared for was the never-ending knocks at our door to take Ruby for tests. On top of that, because the kids and my mom didn't know anything yet, every time there was a knock, I'd have to try to shoo them out of the room out of fear they'd hear something from a doctor instead of us.

Tests, tests....heart, hearing, thyroid...the list seemed to go on. And with each test came a new set of fears. Most of those fears came from me not knowing what Down syndrome was, what it could mean, what it can affect. Ruby failed her hearing test. Another gut-check. I steeled myself for the follow-up test, telling myself that I enjoyed doing sign language with the other kids when they were younger...we could handle this. (The next day, she failed the follow-up. Again, I closed my eyes and powered through. Finally, she passed the final one. Only momentary relief because I know we'll have to follow-up once we get home.) Then, I think I held my breath the entire time she was out of our room getting her echo cardiogram with the cardiologist. But he came back to us with a clean report and at least one (HUGE) fear was quieted.

Ruby returned right behind the cardiologist and the kids and Grandma Cathie finally got to meet her. Joy. Pure joy. The kids absolutely loved her at first sight and were beside themselves with pride. You couldn't wipe the smile off of Eli's face if you tried...he was so in love with her! And Maddux could not have been a more doting big sister. Seeing Ruby through their eyes reminded me of how I was able to love her when she was first born, before I knew anything was different. How freely I loved her in those moments, without grief, without worry, without fear. Watching the kids hold her and kiss her and marvel at her was so needed in that moment!
The day continued with a few friends visiting and allowing us some sad tears but also there were plenty of joy. The day continued with many pictures of Ruby hanging out, a whole 24-hours old. The day continued with more tests, including another failed hearing test. The day continued with Ruby peeing on Lehr almost every time he changed her diaper. The day continued with a conversation with a couple in Texas who helped reassure us that it was going to be ok. The day continued with Ruby turning her head towards Lehr or I ever so slightly when we held her. The day continued with Ruby nursing really well and showing us that her oral muscles would not need immediate attention. The day continued with our daughter spending a lot of time awake and alert, her eyes searching mine, humbling me every time. The day continued with Ruby cementing herself in our hearts and in our family.

As lengthy as it is, I think that's a good place to end the birth story. However, in no way is that the end of the struggles for Ruby, the end of readjusting our expectations, the end of the fear. But the good news is, in no way is that the end of Ruby's story - her story is about so much more than just a diagnosis. About so much more than just a chromosome test. She will teach Lehr and I things that we couldn't possibly learn from anyone else, and she'll make Maddux and Eli the best siblings they could ever be, and she'll paint the world sunny. Of that, I have no doubt, and in that knowledge, I have no fear. I now know that Ruby is not what we expected; she is so much more.


Gina said...

I am so glad you finally posted her birth story. I’ve been dying to read it! Despite the fears and struggles you are facing and the heartaches I’m sure you’ll come across, I am so happy for your family and that Ruby has been placed with 4 doting souls. You are meant to be her mother. God sent her to you for a purpose because he trusts your loving ways. People say the words “intuition” and “gut feelings” – but all that is just God guiding you to do what is best for you and your children. You are never alone in your struggles. We can always look up for more guidance and direction. We have the power to access the answers we need if we are faithful. You are so strong and capable, Nicole. I know you probably think, “what does that blogger friend know” – but I do. I can tell. Your children are so very fortunate to have you raising them.

Miranda said...

Nicole, thank you for sharing! I have to admit, my heart was sad when you were worried by sharing your feelings you would come across as ungrateful or not faithful enough. This was not a small, shallow disappointment - this is a big unknown change to the little girl you had envisioned and to your family dynamic. It's natural to have the gamut of feelings you described and more. I hope that you will continue to share what you're feeling as you start on this journey with Ruby without fear of what others will think, and without concern that what you're feeling is wrong. No one ever wants their child to struggle or hurt in any way, and you both work so hard with your kids to ensure they have the best life possible that this was surely difficult to adjust to.

Ruby is so beautiful - I love the picture of her with Lehr! I know that she will be a blessing to all of you and a way that God will grow you as a family and individuals. I pray that the impact of that tiny extra chromosone is minimal, and has no effect on her health and happiness in life. She is so fortunate to have all of you helping mold her into the person she will become!

Unknown said...

Hi, I found out about your blog through my mom's neighbor. Thanks for sharing your story. On April 28th I gave birth to beautiful Lucille who was also 3 weeks early and has Down Syndrome. Her diagnosis was a surprise for us as well. I love your pictures of Ruby. I hope Ruby and Luci can meet one day and become friends!

The Mommy Salami said...

Ruby is so lucky to have you. You and Lehr have such a wonderful family. I don't get to "experience" your family in person, but from photos and videos it is clear that you are doing a phenomenal job as parents. I have no doubt in my mind that you will be just as amazing with Ruby.

By the way, how you wrote that was beautiful. It was so honest and raw, yet so full of love.


The Mommy Salami said...

Ruby is so lucky to have you. You and Lehr have such a wonderful family. I don't get to "experience" your family in person, but from the videos and photos it is clear that you are doing a phenomenal job as parents. I have no doubt that you will be just as amazing with Ruby.

By the way, what you wrote was so beautiful and raw, yet full of love. It was perfect.



bev said...

I have always admired your strength and dedication as a mother. God blessed Ruby with the perfect family. It's evident in every single picture. The love pours out d I look forward to seeing her grow as I have Eli and Maddux.

Runningmama said...

Hey there, I was forwarded your blog from a friend who reads it and knows I have a daughter with Down Syndrome. Your sweet baby girl is beautiful. I am in the middle of revamping my blog, but the content is there if you would like to read it, I started it when she was about 4 months old. We did not know Emily would have DS when she was born either and I am sure some of the emotions you are feeling now are very similar to what we felt. I live in the ATL area as well so please let me know if there is anything I can do for you or if you need someone to talk to, I would be happy to be there for you. Just email me at My new blog address is