A Letter to our Daughter on her First Birthday

            

Dear Ellie,

It was five years ago when your daddy and I both had dreams about you being in our lives. To be honest, it scared us. It scared us so much that we had decided not to have anymore kids. 

The day I found out I was pregnant with you, you surprised us again. Once the shock wore off, we were ecstatic and couldn't wait to meet you.

When the doctors told us to prepare to lose you when I was only 10 weeks pregnant, you surprised us again and you kept growing and getting stronger in my belly. 

When we found out you were a GIRL you surprised us again. We had thought you would be a boy based on our track record. We were so excited!!

When the doctors told us you had a heart problem when I was 38 weeks pregnant and that you could come out blue, you surprised us with your adorable little pink body and cute girly cry. 

When the doctors told me my tests were negative for all trisomies, and you were born with T21 you surprised us. But we had already met you in our dreams so we were comforted in knowing that you were just where you were meant to be.

When the doctors listed off all of the medical problems you could have, including sight and hearing problems, thyroid issues, heart and digestion diseases, you surprised us. You were cleared by the cardiologist at 2 months old. You have passed all your hearing and vision tests. You have none of the problems that the doctors warned us about. 

Every step of the way you have blown us away. You have the ability to bring joy to every person you meet. You are inquisitive and smart. You are starting to talk and interact with everyone around you. You gently lay your hands on your brother’s face when he is crying, comforting him and making him smile. You have the cutest laugh and your brother Will brings it out of you the best. You are so loved by us, as well as all of your aunts, uncles, cousins, brothers, grandparents and friends.

                         

You are a daddy’s girl to your core. You light up when he walks in the room and give him the biggest hugs and kisses of all. If he's had a hard day at work, he loves to snuggle you because you somehow make everything better.

                      

On your first birthday I want to thank you for choosing us to be your parents. We are so lucky to have you as our little girl. You make us so proud. We know you will continue to shine as you grow. We can't wait to see what you accomplish in this life. Everyone tells us how lucky you are to have us as parents. But I can tell you this, we are the lucky ones, thank you for being our daughter.

Love mom and dad.

                     

Your daddy chose the song for this post, and I think it's perfect for you baby girl.

Stevie Wonder - Isn't She Lovely

Dreams Really Do Come True

6 months!

I can't believe our little Ellie is already 6 months old. In all honesty, every day goes by faster than the one before it. It's crazy to me.  She's starting to give us hugs and kisses, when I first realized she was doing it intentionally it made me cry (surprise, surprise.) We have only heard her giggle twice so far, and she's sitting up pretty good (with support of course.)  She's also eating baby food like a champ.  So far her favorite is apple sauce.

Eating lunch like a big girl.

Her personality is awesome.  She is very laid back and loves to give snuggles. She smiles more and more each day. She's also been sleeping through the night since 3 weeks old. Last weekend I woke up to the sound of the lawn mower outside.  I looked over and Jesse wasn't in bed, Ellie was fast asleep next to me in her bassinet.  I got up and Luke was still asleep too.  I checked the time and it was 9:45.  What baby sleeps in until 9:45? Or even a 4 year old for that matter?  I made my way outside and Jesse and Will were out mowing.  They said they got bored waiting for us to wake up :-P She is such a fun baby and loves to sleep like her mama.

When I think back to how Jesse and I both had dreams about Ellie before she was here, I still get goose bumps.  I recently found an old email I had written to a friend.  I was discussing having two children and how Jesse and I didn't want to "risk it" by having another baby.  Here's an excerpt from that email:

"I always felt like I'd have a daughter, and my husband feels content and grateful for our two boys, he says he doesn't want to risk anything again. We actually both had dreams while I was pregnant with my youngest that we had babies with down syndrome. When they thought Luke might have it, my husbands face turned white. Later I confessed my dream to him, and he said he had the same dream! It was all too weird. When we found out Luke was OK it was such a relief.  I think that's still in the back of his mind." 

It boggles my mind that Jesse and I both had premonitions about her.  We were being prepared for her arrival without even realizing it. My mom and dad always said that our dreams represent "a fear or a desire."  When I told mom about my dream she reassured me "oh honey, it's just a fear" and she told me I needed to stop worrying about it.  Well I didn't realize it at the time, but it turned out that my dream was a desire, not a fear. I can't imagine my life without Ellie in it. I'm so grateful for her. I'm so glad our dreams came true.

I love this picture for so many reasons.  It shows off some of Ellie's "Down syndrome markers" so I thought I'd point them out: brushfield spots in her eyes, flattened nose bridge, upward slanted eyes, her single palmar crease across her hand, small low set ears... to me, it's just Ellie and I think she's beautiful. :) 

This month Ellie has her big appointment at OHSU's Down Syndrome Clinic, her 6 month well-baby visit, and an appointment with the eye doctor.  I will do a blog post to update everyone on how she's doing. I have wondered how well she can hear, see, and if her thyroid is functioning. I'm so curious to see what the panel of specialists at the DS Clinic will tell me.  It is 4 hours long, so I'm sure we will get something worthwhile from the appointment.  My fingers are crossed all goes well.

This is Ellie's old man impression.. "where's my teef, sonny?"

Here are a few more pictures of our smiley 6 month old. She had a great 4th of July with everyone. She was held the whole time and slept through the loud booms of the fireworks show. I was a slacker and didn't take any pictures of our big party this year... darn it. 

4th of July - Shooter Jennings

Ellie and her big brothers

This is one of her new smiles and it cracks me up!

Being silly for the camera! I'm addicted to my collage app on my phone (obviously)!!

Who I am - 3/21 World Down Syndrome Day

Today is 3/21, World Down Syndrome Day. In honor of this special day I wanted to share an amazing video by the IDSC (International Down Syndrome Coalition) called "Who I am" and I would also love to share with the world who our Ellie is!

International Down Syndrome Coalition - World Down Syndrome Day 2013

Ellie Lehne...

I am snuggly, I am sweet, I am cute, I am petite!

I am the apple of my daddy's eye-

I am an adored niece (with 7 uncles and 4 aunts!)

I am the most favorite baby cousin ever-

I am a pretty princess-

I am a very loved baby sister to two awesome big brothers-

I'm a movie star! Yeah that's right!

I'm an excellent sleeper!

I am my mama's world-

I am a blessing to my family-

I am a lucky granddaughter and great granddaughter-

I am who I am, I am Ellie!

Hall of Fame - The Script ft. will.i.am

Feeling Good Again: Ellie's Health Update

Ellie was born with a heart and neck issue, and for the past 2 months I feel like I've been holding my breath hoping she's OK. Well this past week she had an MRI and cardiologist appt, and I'm happy to report that she's doing amazing (woooo hoooooo!!)

A little bit about her neck.. While Ellie was growing inside my belly, she was laying in an awkward position, with her head touching her back (see pic below.) At the time, my OB said it could be a neurological issue, an osteo issue (like she would eventually need a helmet) or it could be nothing at all. When I googled "hyperextended neck" the first thing that came up was a baby with Down syndrome. Even my friend from work found this info online and asked me if it could be DS. I immediately brushed it off since all of my prenatal testing never suggested DS (surprise mom!!)  Jesse says she's like an owl, which is fitting since that's the theme in her room :-P

The crazy position she likes to sleep in! I had to send this to her pediatrician to show him what I was talking about.

She has a really floppy head and it's taking her longer for her to get her neck strength and to hold her head up. She had an MRI last Wednesday to look at her neck and brain stem.  Her pediatrician mentioned hydrocephalus, talk about making this mommy worry! Her MRI results are in and her neck looks FINE! We are starting physical therapy this week to help with this, what a relief.

Then today she had an appointment with the cardiologist. He's one of the best around, so I felt really confident in him from the beginning. He's the same doc who detected her issues in utero.  So today they did an ultrasound of her heart... the issue has resolved itself, the PDA closed on it's own! There is "no follow-up needed" ah, we are so grateful!!

All dressed up to go to the big city for her heart appointment.

I was feeling a little "heavy" today, trying to not worry about Ellie's heart. What if she needs surgery...? I could feel my emotions in my throat and was dreading any bad news, like I was going to lose it any second. The number of appointments she has is already overwhelming. I just hope that now that her heart and her neck are "OK" that I can focus on loving my baby. I also got this in my email today and found it quite reassuring (it's from the Secret):

"When a big change occurs in your life it forces you to change direction. Sometimes the new path may not be easy, but you can be absolutely certain that there is magnificence for you on the new path. You can be absolutely certain that the new path contains things that you could not have experienced otherwise.

When we look back at a negative event that occurred in the past, we often see how in fact it transformed our life. We see how that event directed us toward a life that we would not change for anything."

Hi guys! 

I'm by no means saying Ellie's birth is a "negative event" but her diagnosis is definitely a new path that our life is on. I feel like I can breathe a little easier knowing that her lil' ticker is working and that her neck will get better with time. ❤

Robert Earl Keen - Feeling Good Again

Ellie Lehne: Our Birth Story

My pregnancy was the pits. When I was pregnant with my boys I loved being pregnant! But this one was different. I bled from weeks 7-14. My OB warned me that the pregnancy may not be viable. I rubbed my belly and prayed that the baby was OK. I had a number of other issues, from a low thyroid, anemia, gestational diabetes and varicose veins in places I'd rather not talk about. I kept telling everyone how this baby was meant to be here if we both had made it through all of that!

Will and Luke cannot WAIT for sis to be born.

Then in the last weeks of my pregnancy I was really sick. I had green skin, was sweaty, fevery, my teeth were chattering and I had chills, I felt like I wanted to curl up in a ball and die. I was diagnosed with bronchitis and was given antibiotics. Finally I was on the mend but the baby wasn't kicking me like she normally did. I was really worried. At my OB appointment I told them about her movement lessening and they immediately sent me to have an NST (non-stress test) where they monitor the baby's heart rate. Her heart was not accelerating like it should. At the appointment they found fluid around her heart. It was so scary. Within a week I had 4 NST's and BPP's and she was failing all of them. I contacted my friend from grade school who is now a Midwife. She was my savior.  After many late night chat sessions on Facebook and a few phone calls later, she said "this baby needs to come out, now!" She was right, I knew she needed to come out.  She gave me the courage to listen to my instincts.  At my last couple of appointments I begged them to get her out. I could feel it in my gut that something was not right. 

At my last ultrasound the tech noticed the chambers of her heart looked uneven. She called the doctor in and he was concerned too. By some miracle, there was a pediatric cardiologist in the office that day. They set up an appointment for a few hours later so he could take a look. My mom was with me and we went and had a fattening pizza lunch then shopped at Goodwill to pass the time. Jesse met us at the appointment, and I'm so glad he did. The cardiologist had some news for us. There is a vessel in the heart called the ductus which stays open while the baby is in utero and then it closes once the baby is born. The ductus in our daughter's heart already had closed and he said she needed to come out the next day. They called it a "PDA". I was 38 weeks pregnant.  We rushed home to pack our bags and couldn't believe we were about to meet our daughter!

Hi mom and dad! I'm cute already!

It was January 4th. This day would end up being my daughter's birthday, and will be a day that will forever be burned in my memory as one of the most stressful, exciting, miraculous and life-changing days of my life. We were all ready to go, we were excited and nervous all at the same time. My mom, brother Matt and sister-in-law Diane were there and I was so glad they were. I was wheeled into the OR for my c-section and Jess had to get his scrubs on and wait. My mom, Matt and Diane helped to keep the tension light with their comedic ways. Jesse was worried about us, I could tell although he never said it. This was a much different scenario than our boy's births! My family kept him laughing all the way until they said it was go time.

My last moment as a pregnant woman, ever!

Ready to roll!!

Jesse came into the operating room and kissed me on the head. "I love you honey, you will do great! It's time to meet our baby girl" My nervousness subsided once he was there with me. There's something about this man that always makes me feel safe. Just having him next to me I knew we were going to be OK.

The cardiologist had warned us that our daughter could come out blue because of her heart issue. We were mortified. I prayed and prayed for her to be OK. The NICU team was ready for her and were on stand-by. Jesse had the camera in-hand and I made him promise to take a picture when they held her up. The docs had a hard time getting her out because her head was stuck under my ribs "just another tug and she will be out" they said. All of the sudden Jesse says "there she is!" But they didn't hold her up, I didn't hear her cry, and Jesse didn't take her picture. They whisked her away into another room and I was terrified.

A few minutes later they asked Jesse if he was ready to meet his daughter. I thought to myself, "she's fine, oh thank God!" I reminded him to take a picture of her. I was so anxious for him to come back and tell me all about her! I had dreamed about having a daughter my whole life and it was finally coming true! As he disappeared behind the heavy double doors I heard a cute girlish cry. Hot tears streamed down my face. I heard my daughter cry. My daughter! I have a baby girl! And she's OK!

Jesse returned to me, his face was pale and his eyes full of fearful tears. "What's wrong? Is she OK???" I said, panicked. Through the tears he told me that they suspect she has Down syndrome. It felt like the blood had drained out of my body, from my head all the way down to my toes. "No she doesn't, there's no way!" He said the doctors are pretty sure and that they found some "markers"... "Like what?" I asked. "Well, she has a crease across her palms, her first toe and second toe have a big gap between them, her ears are small and set low, and her facial features". I asked him what he thought, and he just shrugged.  I needed to see her. He had taken some pictures so I squinted at the little screen on my camera. I don't see it at all. She's my beautiful daughter, she looks just like her big brother Will. She doesn't look like she has Down syndrome! Is this really happening to us? I cried, hard. Then I apologized to Jesse. I don't know why but I felt like as her mother it was my job to protect her and I had failed. It was absolutely gut wrenching. Jesse didn't want more kids, in that moment I was ashamed and horrified. Is he going to leave me? I'm going to have to raise my three kids alone! This is too much for him! He will never walk her down the aisle! My dreams of having a daughter were crushed. I want what my mom and I have, she's my best friend. How am I going to do this? Will I have to quit my job? What about Will and Luke? This is going to change their lives too, forever! It's amazing the number of irrational thoughts I had in such a short period of time. Then I said "we are going to love her, she's our girl" and Jesse agreed.

Jason Mraz - I Won't Give Up

My first glimpse of my daughter was this photo.

After I was all stapled up I was wheeled back to the room, Jesse was squeezing my hand the whole way. I was numb. Not just from the spinal block, but my head and my heart were numb. When we got back to my room my mom, Matt and Diane were waiting there for us. They told us later that by the looks on our faces they thought she didn't make it. I could barely speak and I told them what the doctors said. "They think she has Down syndrome" my mom hugged me tight. For some reason the experience of telling my family is foggy. I don't remember what was said. My brother said they were all crying. I wish I could remember.

They finally brought her to me and I got to hold her for the first time. A protective fierce love washed over me. I wish I could go back to that moment and hold her and love on her all over again. I was inspecting her because I was trying to see if I could see what the doctors were telling me. I feel guilty for that now. She looked so perfect to me. I didn't want to give her back to the nurse, I wanted to hold her forever. I wanted her to be healthy. I closely looked at her long skinny fingers and toes, her cute lips with the top lip sticking out further than the bottom one. Her nose that was just like her mamas, and her right ear that was just like her daddy's and her left ear that was just like mine! I couldn't believe how beautiful she was.  I only got to spend 5 minutes with her and it would be hours before I got to see her again.

When Jesse and I were alone in the hospital room, he reminded me of something. "Remember our dreams?" I had already thought of them. It's unimaginable, but we both had dreams about this little girl. This little miracle baby who was determined to be in our lives. She is here, through the horrible pregnancy and surprise conception. She was 100% meant to be ours and Jess and I both saw her in our dreams, Down syndrome and all. She was waiting for the perfect moment to come down and be ours, from a dream into our arms.

Once the medicine wore off I begged Jesse to wheel me up to see her. It had been 7 hours. Jesse spent the whole first day next to her side. I often wonder what was said during that time. I think he whispered to her how he was going to protect and love her for the rest of his life. I think that first day was very important and special for them. They bonded as father and daughter. He was there for her when she needed him the most. She is a lucky little girl to have this man as her father. The love he has for her is insurmountable.

That night was the hardest for me. The pain reminded me of the way I felt when my father died. My stomach turned and was in knots. I would wake up every hour and sob. It's such a conflicting feeling, the fierce love you have for your child but the fear of the unknown. Jesse would wake up because he would hear me crying and would comfort me. Every time I would wake up I would think it was a dream. I would reach down to feel my big pregnant belly and it wasn't there anymore. This was real. I couldn't believe it was happening. I was so scared for the future, I didn't know anything about Down syndrome, or what this meant for our life.

The next day we were in the NICU visiting our girl. We were still inspecting her and trying to see if we could see "it". The pediatrician came in to see us and handed us a book "Babies with Down Syndrome: A New Parents Guide" it was so in our faces. We didn't even know if she had it yet! The karyotype was supposed to be back in a couple of days with the results. Although, deep down, I knew she had Down syndrome. We even joked about how I looked like I had Down syndrome as a baby. We laughed about how she just looks like me! Maybe I have Down syndrome too! Another marker is a flat head, the pediatrician commented on how our daughter's head was so round. I pointed out my brother Matt's head shape. It is flat on the back. Matt turned his head so the doc could see, and he agreed his head shape was considered a marker. We all laughed and gave my mom grief for leaving Matt in his crib, leading to his head shape. It was nice to have some humor during this time to break up the tears. Our family tends to deal with everything using humor. But Down syndrome or not, we knew we loved this little girl more than anything in the world.

The second day of her life I told Jess that we needed to decide on her name already! We had Quinn or Harper picked out for months. I knew in my heart we would use Quinn. When I saw her she didn't fit either name. As I was next to her bassinet looking at her sweet little face Jesse said "what about Ellie?" Something about that name felt perfect. I grabbed my phone and looked up the meaning. Ellie: Warrior, Sun Ray, Light. That was it! I was in tears and emailed my mother-in-law. I knew she would be excited because Ellie was her and my father-in-law's name choice. I can't imagine our girl as anything but Ellie. And her middle name is Lehne (pronounced Lane) which is my beautiful mother's maiden name. I love it. My Ellie girl. Ellie Belly. Ells Bells. Ellie Bean. Ellie L. Sissy Roo. My daughter.

To sum up the magical journey of meeting the girl of our dreams, I have to mention when I heard the song "Wonder" by Natalie Merchant. I have a huge connection to music, and truly believe I receive winks from above through songs and song lyrics. It was just a few days after I was home from the hospital and Ellie was still in the NICU. This song came on as I was making dinner and the lyrics hit me like a ton of bricks. I had heard the song a hundred times, and have even sang along!  But I had never really "heard" the song until after our Ellie was born. 

Oh, I believe
Fate smiled and destiny
Laughed as she came to my cradle
Know this child will be able
Laughed as she came to my mother
Know this child will not suffer
Laugh as my body she lifted
Know this child will be gifted
With love, with patience, and with faith
She'll make her way

Natalie Merchant - Wonder

She'll make her way, I know she will. We are eternally grateful you are ours, Ellie Lehne. You are a dream come true.

The first time Will met Ellie. He was in love.

Will loving on baby sissy.

With her big brother Luke.

One of the first days home from the NICU.

Looking at her mama.

Uncle Matt and Auntie DiDi, they love their Ellie and were there the day she was born!

My mother-in-law, aka "Grammee" who spent quite a few nights with Ellie at the hospital. Their slumber parties were very special!

My mom, Barbara, aka "Grandma" with Ellie, her 7th grand baby.

Ellie and her awesome Papa, my father-in-law, and his 6th grand baby!