Friday, March 29, 2013

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

My 2 Month Old Secret

I feel really guilty and feel like I need to write about when I told my brother Danny about Ellie's Down syndrome. She was 2 months old when I finally told him (as I hang my head in shame.) 

I have 6 brothers, 5 real and one adopted. My big bro Danny (the second oldest boy) is special (there's no better way to put it!)  When he was born my mom said he was like any other baby and was a happy boy.  He also had a patent vitelline duct, which means his little belly button was herniated. This was in the mid 1960's and his doc told my mom it was no big deal when she voiced her concerns over the phone.  When Danny's pediatrician finally saw him he was shocked over the size of the hernia and they scheduled surgery immediately.  He was 6 weeks old.  When my mom and dad brought Danny home they said he was a different baby. According to my mom, he was lethargic and would just lay there.. if she would lay him on his tummy he would lay face down and not move. Heart breaking. Her gut instinct told her it was from too much anesthesia. 

Could they be any cuter? My 5 brothers, Danny is in the upper right.

My brother Danny and I, 1978
Danny and I in 1995

As Danny grew up he was delayed, but the docs never really knew the reason behind his delays. They just told my parents he was slow.  He is now a 47 year old stud, who has lived in the same apartment for 25 years. I told him he's the best tenant that has ever lived! He's also a devout catholic and in the Knights of Columbus. He loves to say he "has to pray hard to get this family to heaven".  He's awesome and he's our angel. He also proudly tells everyone that he is "Rainman" because he literally can tell you any sort of sports history you ask him about... who won the Superbowl in 1977?  He would tell you not only who played, who won, but also the scores. Oh and yes I chose 1977 because that is one of the years the Raiders won. If you ever meet Danny ask him about the Raiders. He is the most loyal fan I've ever known! Just don't ever say "Raiders suck", as my brothers can tell you, Danny has a punch called the "hollow back" and it can knock your butt down in 2.2 seconds. 

My brother's fake band pic... love this one.













Where am I going with all of this? Well when Ellie was born we relied on my brother Matt, my mom and in-laws and text messages to get the news out to our friends and family.  The task of telling Danny about Ellie weighed heavy on my heart. Danny is a worrier, big time.  I had heard him talk about people with Down syndrome, one of his friends has a daughter with DS who is now 9. She battled leukemia.  Every time he mentioned her he says she's the "girl with Down Syndrome and leukemia". I just knew he was going to worry about Ellie.  I worried about him only thinking of her having Down syndrome and not thinking of her as his niece.  She makes him an uncle for the 7th time by the way, which is his favorite number. :)

I kept mustering up the courage to tell him and every time I would call it would be a busy signal (he's a big chatter on the phone!) So finally one day he called me while I was laying on the couch snuggling Ellie. She had just turned 2 months old. I said "hey brother I have to tell you something about Ellie that I haven't told you yet" and he said "What, T?" and I told him. He said "Awww!!" but not in a sad way. Imagine it being said with excitement.  "She does?!?" he proclaimed. I was so nervous. He then said "She's a gift from God Tiff! She's going to be awesome!" Yep and then the tears started. "Darn it Danny!" I said... "there I go crying again!"

So there you have it. Uncle Danny is fine with Ellie's diagnosis. Shame on me for worrying about it, I could have used his love and support in the beginning but I was too scared to tell him. 

First time Uncle Danny met Ellie.

Oh they will kill me for putting this picture up! 3 of the 5 were actually in the Army. 
Almost the whole crew, missing brother Joey from Texas.

Daniel My Brother - Elton John

Monday, March 11, 2013

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






Thursday, March 7, 2013

Our Little Tulip

The day after Ellie was born I read a poem by Emily Perl Kingsley called "Welcome to Holland" about what it's like to raise a child with a disability. At that moment it was perfect for me. It talked about the unexpected journey I was about to take. I liked how it explained this new adventure and I sent it to our family and close friends to help explain how Jess and I felt about Ellie.

You can read it here:

http://www.our-kids.org/Archives/Holland.html

My best friend sent me a bouquet of tulips after Ellie was born and the card said "Ellie is the most beautiful tulip in Holland" and I absolutely loved it. I loved it so much I even picked a tulip stamp for my baby name necklace. It went perfectly with her big brother's disks.  My family was complete. 



As time has gone on, I have re-read the Holland story many times. I have to say that I still think it's beautiful but I also don't agree with it 100%. She says that it was a "very very significant loss". But I no longer feel this way. I did for about 2 days after Ellie was born. I grieved for the loss of the daughter I thought I was going to have. But the little girl I'm holding in my arms is who she was meant to be, from the moment she was conceived. She is the same baby that was kicking inside my tummy and who I would sing to while driving to and from work every day. She is perfect to me and I don't see the dream of what could have been as a sad thing. I think this is the trip Jesse and I were meant to take- we were meant to go to Holland all along!

Daughter - Loudon Wainwright III





Saturday, March 2, 2013

Ellie Lehne: Our Birth Story


My pregnancy was the pits. When I was pregnant with my boys I loved being pregnant, yes I was one of those women! 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 to varicose veins in places I'd rather not talk about (ouch!) 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. Green skin, sweaty, fevery, teeth chattering chills sick, like I wanted to curl up in a ball and die sick. I had bronchitis and was given antibiotics. I was finally on the mend but the baby wasn't kicking me like she normally did. I was 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 have so I was sent in for a BPP (biophysical profile). They found fluid around her heart. Ugh. This is scary stuff. So 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 terribly wrong. 

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 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.  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!

January 4th. This is going to be my daughters birthday, and 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. I'm so glad they were there. I was wheeled into the OR for my c-section and Jess had to get his scrubs on and wait. Mom, Matt and Diane helped to keep the tension light with their comedic ways. Jess was worried about us, I could tell although he never said it. This is 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!!


Jess came into the operating room and kissed me on the head. "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. Jess 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. Jesse says "there she is!" But they didn't hold her up. I didn't hear her cry. Jesse didn't take her picture. They whisked her away into another room and I was terrified.

A few minutes later they ask Jesse if he was ready to meet his daughter. I think to myself, "she's fine, thank God!" I remind him to take a picture of her. Oh I was so anxious for him to come back and tell me all about her! As he disappeared behind the heavy double doors I heard a cute girlish cry. Ahh the tears stream down my face. I just heard my daughter cry. My daughter! I have a baby girl! And she's OK!

Jesse returns to me, his face pale and his eyes full of tears. "What's wrong? Is she OK???" I'm panicked. Through the tears he tells me that they suspect she has Down syndrome. It felt like the blood drained out of my body, from my head down to my toes. "No she doesn't, there's no way!" He says the doctors are pretty sure and that they found some "markers"... "Like what?" I ask. "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 thinks, and he just shrugs.  I need to see her. He took some pictures so I squint at the little screen on my camera. I don't see it. 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? I cry, hard. Then I apologize 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 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 holding 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" and 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. I wish I could go back to that moment and hold her and love on her all over again. I was inspecting her, trying to see if I could see what the doctors were telling me. I feel guilty for that now. She looked perfect to me. I didn't want to give her back to the nurse, I wanted to hold her and protect her. 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! She was beautiful.  I only got to spend 5 minutes with her. It would be hours before I got to see her again.


When Jess and I were alone in the hospital room, he reminded me of something. "Remember our dreams?" I had already thought of them. It was crazy, 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 meant to be ours and Jess and I both saw her in our dreams.

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. 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 this was happening. I was so scared for the future, for her health and for the unknown.

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 don't even know if she has it! The karyotype was supposed to be back in a couple of days with the results. Although, deep down, I knew she had it. 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.


The second day of her life I told Jess that we needed to come up with 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 isolette looking at her sweet little face Jesse said "what about Ellie?" Yes! Ellie! That's it! I grab my phone and look up the meaning. Ellie: Warrior, Sun Ray, Light. It was perfect! 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.


When I heard the song Wonder by Natalie Merchant it struck me. It was a few days after I was home from the hospital and Ellie was still in the NICU.  It came on while I was making dinner and I just started sobbing. I had heard the song a hundred times, and 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

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!








Friday, March 1, 2013

The Girl of our Dreams

It was winter of 2008, our son was a year and a half and we were anxiously waiting to find out if he was going to have a new baby brother or sister in May. Shortly before the gender ultrasound I had a vivid dream about a little girl. I don't remember what was said but I knew she was my daughter. She was adorable, her hair in two pigtails and she was wearing little glasses. She also had Down syndrome. I woke up feeling uneasy about my dream. There's no way I'm going to share this with Jesse. The pregnancy was uneventful so far... This baby is fine, right?

We went in for the 20 week ultrasound. Jesse squeezed my hand as the wand slid over my big belly. "Do you want to know the gender?" "YES!" We reply in unison. We had been taking bets, he says boy and I know in my heart it's a girl. As the ultrasound tech gets a peek at the "potty shot" I knew immediately. "It's a boy!!" My husband actually blurted out "Yesssss!!!" And it bugged me. I thought for sure I was pregnant with a girl. This whole pregnancy was so different than my first. But I saw the little pee-pee on the screen, he was definitely a boy. My husband apologized and said "but I'm going to have two boys... Two! They will be buddies for life!" I was so excited too, the idea of pink, tutus and bows faded quickly and I was truly grateful. Two healthy boys, this is going to be awesome!
Then as the ultrasound went on I was chatting with our ultrasound tech. I mentioned how I couldn't imagine how hard it would be to be in her shoes when she finds problems on the ultrasound. She nodded her head in agreement and said "I need to go grab the doctor, and will be right back." You've got to be kidding me. I look at my husband and say "seriously? How can this be happening again?" And I burst into tears. Jesse and I lost our first baby and this was bringing back all of the pain and emotions we felt during that time. Lightning can't strike twice, it just can't.

When she came back the doctor came to my bedside and started to show us what they called "soft markers" on the ultrasound. "See this bright spot in his heart? It's an echogenic focus... And here in his bowel, that is a hyperechogenic bowel" Jesse and I were terrified, we could see it with our own two eyes! But what does it mean? The doctor explained that they were soft markers for Down syndrome. Oh my gosh, Down syndrome? My heart sank and I immediately thought of my dream. It's mothers instinct, he has Down syndrome, he has to! Why else would I have a dream about that particular diagnosis? I look at Jesse and the color was gone from his face. I'd never seen him look so scared.

We opted for the amniocentesis because we wanted to be prepared for what the future held. Jesse was on a work trip so my mom took me and helped me take care of Will. I stayed on the couch for a full 24 hours to be safe. The 3 day wait for the FISH (quick turn test) was the longest 3 days of my life. My OB called with the results, our baby boy has "typical chromosomes". I was so relieved and I immediately call Jess with the news. "Babe, he doesn't have it, but I have to tell you something".... "What??" He seemed concerned, so I told him about my dream. About this little girl who I knew was mine, with pigtails and glasses, and Down syndrome. He was silent.. "Honey?" And he says "I had the same dream." In his dream he was at a football game, standing on the sidelines watching the game. His daughter was next to him, and she had Down syndrome. He didn't want to tell me about his dream either because it scared him. He didn't want me to worry. We were confused as to why we would have the same exact dream, but 4 years later it would all make sense.

Christina Perri - A Thousand Years


Lucas John born in May 2009
Daddy and Luke
Mommy and Luke
My boys
Big brother holding "Woot" for the first time