Monday, March 21, 2016

We're Downright Blessed!

Happy World Down Syndrome Day! 

Three years ago, I had no idea this day even existed.  I didn't have a clue that the baby I was carrying would rock our world in so many ways!

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I read stories about people getting a Down syndrome diagnosis at birth and I wondered how it could possibly go undetected.  I didn't think it could ever happen to me! My chance of having a child with Down syndrome was 1 in nearly 800.

Prior to having Liam, I was completely healthy. I didn't drink, I didn't smoke, I ate a healthy diet, I exercised regularly, I took prenatal vitamins, and I was in my early thirties.  After I found out I was expecting, the blood test results came back normal. I had multiple ultrasounds, and I was told by 3 doctors and our ultrasound tech that our baby was "textbook perfect."

Imagine our surprise in the delivery room!

I would typically be sharing a Downright Blessed: Life with Down Syndrome story today, but since it's an extra special day, I figured I would share a condensed version of Liam's birth story again. After all, he is the reason I started this series in the first place! 

(You can find the full story and all the pictures HERE.)


LIAM'S BIRTH STORY

Liam's birth story is nothing like I imagined it would be.  It was the day that changed our lives forever.  Only one word comes to mind now: BLESSED.

It all began on the day I reached 37 weeks.   

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That afternoon, my mom and I had plans to go to Costco and WalMart to stock up on food and supplies before the baby arrived.  When I picked her up from work, I joked about our shopping trip putting me into labor.  Little did I know that would be true!

While we were out, I was having very strong Braxton Hick's contractions.  By the time we finished shopping, there were slightly painful ones mixed in.  That evening, I told Grant that I was pretty sure that I was in the early stage of labor. 

The next day was Saturday, so we all slept in.  Sure enough, when I woke up, the contractions started again.  I called my parents around noon to give them the warning that I would probably be going to the hospital within the next 24 hours.

That evening, we had plans to go to our friend's house for dinner.  Grant thought I was completely crazy for still wanting to go, considering the fact that I had been having regular contractions for almost 24 hours.

We went, and during an absolutely delicious dinner, the need to actually time the contractions hit me.  I downloaded the app while we were eating, and I began timing the contractions.

After dinner, we all sat down and just spent the evening talking.  My contractions were coming every 5-10 minutes.  Every time I had one, everybody stared at me in silence until it passed.  I finally looked at Grant and told him that we should probably go home, put the kids to bed, and get things ready to go to the hospital.

Once the kids were in bed, we sat down on the couch.  I was still having contractions, but they had slowed down a bit.  We headed to bed, confused and frustrated.  I only slept about 2 hours, then got out of bed, in the middle of the night.

I was feeling very restless and the contractions were coming every 5-10 minutes again.  I had coffee, cleaned the house, talked to a few friends and family members, got ready, and paced the house.

Around 6 AM, Grant noticed the bed was empty and ran to check on me.  I told him that I thought we would be heading to the hospital soon.  He suggested that we leave then, but I was still in denial and thought they would send me home if I went to the hospital.

Sometime between 7-8, I realized that this was it. I called my parents to tell them that they should come over soon, then I called my OB office, and waited for a call back from the on-call doctor.  When the doctor called back and told me to come in, I was so relieved.  I was also thrilled that my favorite doctor was going to be the one to deliver my baby!

My parents arrived, we kissed the kids goodbye, and headed to the hospital.

Let it be known that GRANT WAS RIGHT...AGAIN!  We should have left at 6 AM.

By the time we got in the car, I was in full-blown, active, PAINFUL labor. The contractions were coming at lightning speed, and once again, I felt like I was going to deliver in the car.  It was exactly like our experience driving to the hospital when I was in labor with Lily. I was gripping my seat the entire time. 

We reached the hospital just before 9 AM, and we slowly made our way to labor and delivery.  Our nurse, Crissy, met us in the hallway, and Dr. Kapnadak waved to us from the desk. Crissy took us to triage, because I was only 37 weeks, and they wanted to make sure it was actual labor.

The only other time I had to go to triage first was with Dylan, who was born preterm.  I gave a urine sample, got changed into the hospital gown, answered all the questions, got hooked up to the monitor, and waited for my doctor. Meanwhile, Grant got to hear our baby's heartbeat for the very first time!  My doctor came in, checked me, and announced that I was over 5 cm and completely effaced!  This was it!

Everything happened really fast after that.  We walked to the delivery room, and the nurse hooked me up to the monitors.  My IV was put in, and soon after, I got the epidural.  Grant got our bags from the car while I was having it put in.  This was a much more pleasant experience than my previous experiences with the epidural!

Once the pain medication kicked in, Grant and I were able to relax, and tell everybody that it would be our baby's birthday!  He/She would be sharing a birthday with my sister, Pam!  I was still in disbelief, but so excited to meet our baby!

I spent the next two hours quietly progressing.  Whenever I had to lay on my back to get checked, my blood pressure would plummet, causing me to nearly pass out and feel really nauseous.  Medication helped somewhat, but I just avoided my back!

Grant and I kept checking the heart rate and putting in our guesses for the gender, attempted to choose a boy name, and visited with my sister, Kelly, who showed up near the end of my labor.

Finally the doctor came in for another check, and said that I was fully dilated and ready to go! I can't remember the exact time, but I think it was sometime after 1:00.   My sister went to the waiting room, and they quickly got the bed ready for delivery. Surprisingly, my water never broke!

I remember thinking how surreal it felt and feeling like it was all going by too quickly.

Everything that happened from that point on was a blur.

Pushing felt very difficult this time.  My legs were heavier than they had ever been from the epidural, so I couldn't even hold on to them.  I struggled with feeling like I was going to pass out or fall off the bed.  I was really uncomfortable, but I pushed and pushed and pushed.

I really only pushed a few times, but it felt like a long time!  The doctor explained that she hated to do an Episiotomy unless absolutely necessary, and this time it was.  He almost came out at the first push, but his head was just too big.  After a few pushes, the baby went into distress, and the doctor told me that I HAD to push him out with one more push, or else she would have to use the vacuum.  I had that done with Dylan and tore very bad, so I was motivated to push him out on my own!

I pushed with all my might, and our sweet baby entered the world!

Our baby let out a cry, and with it, I began to cry.  Somebody, although I'm not sure if it was Grant or the doctor or the nurse, said, "It's a BOY!!!  I tried to sit up to catch a glimpse of him.  The doctor commented on just how short his cord was, then told Grant that she preferred to cut the cord so he didn't slip and accidentally cut me.  We all laughed about that.

All I wanted for this delivery was for Grant to be able to cut the cord and for me to hold my baby right after birth.  That has never happened for us!  I was bummed that Grant wasn't able to cut the cord, but still hopeful that I could hold my baby.

I remember the doctor commenting again about how short his cord was, and staring down, looking very concerned.  Now I know why.

I reached out to grab my baby when the doctor handed him over to our nurse.  The blanket was already on my chest, all ready for me to hold him for the first time.  Disappointment and worry kicked in as the nurse spun on her heel and handed him to another nurse.

After that, the room went completely silent.  No baby cries, no talking, just absolute silence.

I remember asking if he was okay, and receiving no immediate answer.  The doctor wouldn't even meet my eyes, which was very strange.  I believe our nurse told us that he got fluid in his lungs during his birth, and that he just needed a little help breathing. She kept squeezing my hand and patting my arm.

Minutes went by, and more doctors entered the room.  I repeatedly asked if everything was okay, because our son was completely silent, and nobody answered.  I just remember a group of doctors and nurses surrounding his bassinet and speaking very quietly.

By that point, I knew something was wrong.

My doctor finished up, said congratulations, flashed us a quick smile, and left the room.  Still no baby cries.

Eventually, he began crying again, and we breathed a huge sigh of relief.  Doctors and nurses began to leave the room.  The remaining nurse brought him over and handed him to me, as if nothing had happened, then left the room, so we could bond with our new son.

After so many agonizing minutes, we were thrilled to have him in our arms.

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The room was completely empty and the delivery lights were still shining brightly on the bed.  I took my son from the nurse, and held him out so Grant and I could finally see him.  His eyes were wide open and they locked on mine.  As soon as our eyes met, my heart plummeted.

Those eyes were so much different than my other newborns.  I knew.  I just knew, deep in my heart, that he wasn't the baby we expected. I actually turned to ask the nurse if he had Down syndrome, and nobody was there.  I stared at him and every expectation I had for him and our future shattered.

I started to cry while I was holding him.  I turned to Grant, sobbing, "He has Down syndrome."  I remember the shock on Grant's face and him asking me how I knew.  All I could say was, "He does. He just does."

We were alone in that room for what felt like an eternity.  Grief enveloped me as I hugged my baby, and I couldn't stop the tears from falling.  Nobody came in to check on us.  I remember feeling so alone and lost.

After what felt like hours, a doctor came into the room, pulled over a chair, and sat down. That's never a good sign. He didn't have to say a word. I already knew.

He struggled to put into words that some of the doctors suspected our baby had a genetic disorder.  I remember Grant asking, "Do you mean Down syndrome?"  I remember the doctor nodding his head, then assuring us that all our questions would be answered. As if that wasn't enough to process, he told us that 3 out of every 5 babies born with Down syndrome have a major heart defect and that he needed to take him to the cardiologist immediately.  With that, our son was whisked away yet again, and we were truly alone.

That's when I lost it.  Completely, truly lost it.  I sobbed, uncontrollably, while Grant tried to reassure me that it would all be okay.  I think I kept repeating the same words.  "It's not okay. I can't do this. I don't want to do this."  I remember asking God why he did this to our beautiful baby.

I remember thinking that I didn't want any of this.  I wanted the perfect, healthy baby I expected. Instead, we were faced with uncertainty.  I was terrified we were going to lose our son or that he was going to need multiple surgeries, and I was terrified of how much our lives were going to change.  I knew nothing would ever be the same again.

It felt like a nightmare.  I kept thinking I was going to wake up at any moment, roll over, tell Grant all about it, and laugh at how much I worried about things. Everything that was happening was completely surreal.

Eventually, our son was brought back to us. Despite the grief, I knew I had a baby to take care of.  I tried to nurse him.  He would latch on, suck weakly for a few seconds,  then turn his head away. On top of that, we still hadn't decided on his name.  I finally told Grant to pick his name. Grant proudly walked over the the board, and wrote down his son's name.

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We realized we didn't have a single picture of our new baby boy.  We were never given the chance to pick up the camera. The first picture taken of Liam was when he was in my arms for the second time.

All I wanted to do was hide out in our hospital room and hide our baby from the world. I didn't want to break the news to our family and friends.  Unfortunately, my sister was in the waiting room, and family and friends were on their way.  Grant brought up the fact that my sister had been waiting a  long time and that we had to go get her.

Kelly came back to the room with Grant, and she was so excited to meet her nephew.  We were still processing the news, so we didn't say anything.  She could tell I had been crying, and asked if I was okay. I just told her I was tired and emotional.  She was so happy to be there during my labor and was thrilled she was the first person to meet Liam. She held him and fussed over him, and didn't even notice anything was wrong.

Before leaving, she snapped a few pictures for us.  I'm so glad she was there and so glad we have these pictures.  A picture is worth a thousand words and these pictures tell quite a story.
  
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After Kelly left, a nurse whisked Liam away, yet again, for more testing.  Once again, we were left in complete silence, and nobody came in to talk to us.  My legs were still numb, so I was trapped in bed.  I couldn't move, couldn't think, and I was emotionally and physically exhausted.  I felt completely numb and completely drained.

We called my parents, who were on their way with our kids. We didn't say anything to them about what was going on.  Grant called his mom, and broke the news to her.  I cried in the background as he spoke.  At that point, I sent the most difficult message I ever had to write to some of my closest friends.

I was still crying when my dear friend, Steph, knocked on the door.  As soon as she walked into the room, she saw the pain on my face, and she started to cry.  She arrived at the hospital before reading my message, so she had no idea.

As she hugged me, I explained what was going on.  She quickly pulled herself together and then pulled us together.  Steph was the moral support we needed so badly.  She put such a positive spin on everything and helped us so much. She started laughing and said, "I'm more surprised that it's a boy than I am that he has Down syndrome!"  I am so thankful she was there for us.  She saved us from falling deeper into depression.

We decided that Grant and Steph were going to take the kids out of the room as soon as they arrived so I could tell my parents everything. As soon as my parents walked into the room, we greeted the kids, and told them Grant was going to take them to the cafeteria for a treat. My parents immediately knew something was going on, especially since the baby wasn't in the room with us. The look on my mom's face was one of pure terror.  As soon as the door closed behind them, my face crumpled.

I remember my mom's voice, filled with dread, "What's going on?"  I remember trying to get the words out through my tears, "They think he has Down syndrome." I remember her dropping everything she was carrying to the ground, crying out, "NO!" and covering her mouth with her hand.

I think she hugged me while we cried, I think they asked questions, but I truly can't remember anything after her reaction. That is, until my awesome dad, with his amazing positive attitude, said, "Okay, where's my grandson? I want to meet him!"

Grant, Steph, and the kids returned, so I called the nurses station to ask for my son back.  Steph pulled out her camera and began capturing all the special moments while we waited.  We gave the kids their big sibling gifts, I tried to eat something but ended up feeding Lily instead, the kids felt my empty belly, and I showed them pictures of their new sibling.  Dylan, Lexie, and Lily were the distraction we needed. Their happiness and excitement were contagious.

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I was so afraid that our family and friends were going to act differently around him. I was afraid that all they would notice was his slanted eyes or the extra skin on the back of his neck.  Our family and friends loved him just as they loved Dylan, Lexie, and Lily.  The love and support from them was amazing, and watching them love our special boy brought tears to my eyes.

Everybody headed home, and Liam was taken away again.  Once again, the sadness hit when Liam was out of the room.  I remember my two amazing nurses coming in before the shift change to say goodbye.  They both wrapped their arms around me and assured me everything would be okay.  They were the first hospital personnel to even acknowledge our concerns.

We began the difficult task of telling our family and friends about Liam.  Within a half hour of telling my mom group on Facebook, I received a message from another woman that had gone through the same thing.  She was the one who gave us the most information, and I am so grateful for that.  Nobody at the hospital would give us any information. Doctors, nurses, and the lactation consultant came and went, but I can't remember anything they said. Mostly, they said nothing. Apparently, they had to treat him like a typical baby until the blood test confirmed the diagnosis.

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It took 3 weeks for those results to come in. Every day I called, and every day I was told they were having trouble getting an accurate diagnosis. My husband began to worry that it was something more serious and everybody who knew the about the suspected diagnosis was anxious to hear the news. 

When Liam was nearly 3 weeks old, he had an appointment with his pediatrician for a weight check.  She asked if we received the test results yet and I told her we were still waiting.  She was LIVID. She told me she was going to call them herself and demand results. Before she left the room, she paused and asked, "Well, what do you think the results are going to be?"

Without missing a beat, I told her, "I think he has Down syndrome."

Less than two hours later, my phone rang and we got the answer we were waiting for.

Liam's birth story was not an easy one to tell.  There are quite a few things I wish I could change, but I would never want to change him.  I honestly believe Grant and I were meant to receive such a special blessing. Even if we had known during my pregnancy, it wouldn't have changed anything.

Dylan, Lexie, and Lily's births were so special. Liam's birth was special, too. I remember the overwhelming feeling of joy when I met Dylan, Lexie, and Lily for the first time, but no matter how hard I try, I can't remember looking into their eyes for the first time.

The moment Liam's eyes met mine is seared into my mind forever.  There are times when I close my eyes and the image is so vivid it makes me gasp. There are times when I try to relive the moment, and I can.  It's just his face, illuminated by the only light in the room, and those big eyes staring into mine. That moment is so beautiful now. At the time, I failed to see his beauty. Now, his beauty is all I can see.

Liam changed our lives in so many ways.  Liam challenged us to be better parents. He brought our family and friends closer.  His birth brought so many amazing people into my life; people I never would have met if he didn't have Down syndrome. Liam made our lives better.

Every day, I thank God for giving Liam to me.  He is a true gift and I am honored to be his mom. I wake up to his incredible smile every morning.  He is joyful, determined, beautiful, captivating, and absolutely perfect.  My love for this beautiful boy is immeasurable.  

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It has been over 2 1/2 years since Liam was born. What an incredible journey it has been!

When we were given Liam's diagnosis, our future suddenly felt dreary. It felt like a jail sentence. That was how I perceived life with Down syndrome. Many people opt against going down the same path we are on because they fear something they simply do not understand and they don't want anything less than perfect. 

The reality is this life is not the jail sentence I imagined it would be. We grew to understand what Down syndrome was and we were able to let go of the fear. My life is now filled with most incredible moments. It is exactly as I pictured it would be before Down syndrome played a role.

The absolute truth is life with Down syndrome is not really scary at all. It's actually quite ordinary! 

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Our sweet Liam changed our lives. We truly are Downright Blessed!

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If you would like to contribute your story to the Downright Blessed: Life with Down Syndrome series, please send an email to lexieloolilyboodylantoo@yahoo.com.  

16 comments:

  1. I love these pictures, he's such a wonderful addition to your family and your story is so touching.

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  2. Okay this brought tears to my eyes. What an incredible story and lucky little boy to you as his mom!! Liam is such a blessing! Happy World Down Syndrome Day Liam!!

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  3. Tears, Stefanie. Thank you so much for sharing your story. You are such an amazing woman and mother, and what you are doing for Liam as well as all kids born with DS is just incredible. God put him in your life for a reason and it looks like you have discovered that and found your purpose. Liam is just the most amazing little guy and you guys are so incredibly blessed to have him, just as he is incredibly blessed to have you!

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  4. Oh goodness what a beautiful, story Stefanie. Thank you so much for pouring out your heart today and sharing with us.

    Side note I just noticed Liam was born on our anniversary :). I'll never forget his birthday again :).

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    1. Awww! And now I'll never forget your anniversary! XOXO

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  5. Thank you for sharing Liam's birth story and your very raw feelings. This brought tears to my eyes as well. Liam is such a sweet, adorable little boy. He looks so incredibly happy in all of your photos. You are an amazing mother - he is so, so lucky to have you. Happy World Down Syndrome Day!

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    1. Thank you so much, Leslie! I always say he is the unexpected gift we didn't know we wanted or needed! XOXO

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  6. I love the post! Have a nice day:)

    http://bit.ly/1VopR1N

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  7. You are very blessed!!! Liam is one very lucky guy!!!

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  8. Awe, I just love reading your birth stories and I just love that little boy of yours! XXOO

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