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Prenatal Diagnosis Story (T21)

DISCLAIMER: Alright, so this isn't the first time Im sharing this story, but its the first time since our life has gone public. The last blog post I did about my prenatal story and how relentless the doctors were about terminating based on my diagnosis received A LOT of hate. I was told that because of the place of privilege from which I speak from, I pretty much shouldn't have a say in the matter. As if having a wealthy family to help you, or not having help is a reason to terminate any life. So if me choosing to love and carry to term a pregnancy that was "doomed" by doctors from the start offends you, then stop reading. Because you will NOT change my opinion on the value of life. I speak for those who cannot speak for themselves because they aren't valued. And if that offends you, then I really don't know why you're following me. 

NOW... lets get to the good stuff. 

Brian and I married on memorial day weekend in 2015. Shortly after we began our journey with the army, and in August we found out we were pregnant. Towards the end of September (around 13 weeks pregnant) I came home from grocery shopping one day, and looked down and I was loosing lots of blood. I drove myself to my OB, where they performed an emergency ultrasound. (This was the beginning of fighting for my child's right to live.) After an incompetent nurse couldn't find the heartbeat on the doppler she told me "oh it died". After I freaked out, she said that she meant the batteries in the doppler. So I demanded to see a professional and have an ultrasound. They were able to find a heart beat and the baby looked healthy, but I had just received our results for the chromosome test, (something we only did so that we could find out the gender before Brian left for BCT because we would have no communication). 

The results of this test are not always accurate. A lot of people receive false positives, and false negatives because the test is a screening of the placenta blood rather than the amniotic fluid. And because I was having complications with my placenta, I was warned that the test could have been a false positive, but I wouldn't know for sure until I did an amnio. Something I didn't want to do because of the higher chance of a miscarriage and I was already having complications. 

After the exam, they told me that my cervix was open and because my baby could potentially have down syndrome I would most likely miscarry before I could make it to full term, so they weren't going to "artificially preserve her life" by stitching my cervix closed. So this began my bed rest. ( Now if you think I am "playing God" by trying to save my pregnancy from a miscarriage, then what is your argument for doctors and modern medicine? Or Firefighters, or nurses? Or Cops? Saving a life is not playing God. And I'm sure if you were the one needing your life saved you wouldn't consider it a crime.) 

Bed rest followed until I was about 20ish weeks pregnant. I bled most if not all of this time. Brian had left for the next 8 months at this time.  Because of the positive screening, they ran extra tests. My NT ultrasound came back normal, no markers for Down Syndrome. My anatomy scan came back normal other than a small focal point, which had I not done the genetic test they would have dismissed as a soft marker. So to be safe I was sent to a specialist at USC Hospital in Pasadena. I was first briefed by a very cold and robotic genetic counselor. I was made aware of my options, and repeatedly asked to do further testing to get a concrete diagnosis before it was "too late". A CVS and an Amnio. I declined. Then I saw the fetal heart specialist. I wish I could remember his name, but I will forever remember his face. As I laid on that cold hospital bed in that dark ultrasound room, shaking from nerves, he approached my case with absolutely no care in the world. "Now, you're farther along than normal gestation for an amnio, but if you're worried we can do an Emergency procedure and I can rush your results so you have time...". We had not even done the ultrasound at this point. I declined again. He began the vaginal ultrasound. Now I can't read anything on those things, but I immediately knew something was wrong. With my basic knowledge of the human body, I knew both halves of the heart should be very similar in size. Adeline's were not. One was significantly smaller than the other. As if it was just not going to develop. I instantly started crying. 

"Because we don't know if you're fetus has Trisomy 21, there are a few different reasonings for this heart issue. Now if it is normal, then the heart could possible develop later on in utero. But if the fetus does have T21 then you're looking at some major heart issues. If it can even survive a stressful birth with this heart, it would then need to undergo open heart surgery or a transplant. And thats if you make it to full term. But theres no way to know for sure without an amnio." 

I didn't speak much after that. I cried a lot. My mom held my hand and prayed the whole time. I don't remember much of what went through my head, other than fear. Fear of losing her before i even got to meet her. Fear of meeting her and not getting a chance to be her mom. Just Fear. And sorrow. Sadness that this perfect living little girl who I had grown so attached to was being talked about as if she was already dead. This was the point where I decided I need to "know for sure". So out of fear, I consented to an Emergency Amnio. 

"I know you said no to terminating, but no one would blame you. Having kids is hard, having kids with special needs is even harder. Its going to be all about doctors visits, and surgeries...." Im sure he went on and on as that long painful needles was pierced through my stomach into the warm safe home my daughter was living in...but i tuned him out. I just cried and prayed, Prayed that her heart would heal, prayed that the needle wouldn't hurt her, prayed that I wouldn't miscarry. Prayed that she would get to live. Prayed that something would be wrong with me instead. If it was between her living or me... that it would be her. 

It would be about 2 weeks before we would find out the results. "My office will call you with the results, unless there are other findings". Then that was it. I remember sitting in the passenger seat as my mom drove us home, and I felt numb. She asked me how I felt, and I remember saying something along the lines of "I just know she doesn't have Down Syndrome. She'll be fine." Im not sure if this "peace" I had was my way of dealing with everything I had just heard, or if i was going through the denial part of this healing process.

On December 15th, the phone rang. It was my OB. " Hi, Hannah. We have your results from USC and your OB would like to meet with you tomorrow to discuss some other findings". Silence. "What other findings? I was supposed to get a call to confirm or deny the T21 diagnosis." Silence. "Uhhh...yesss...welll... I cannot tell you this over the phone, and the Doctor really needs to discuss the other findings with you in person, but he isn't available until tomorrow afternoon." Loud Silence. "Hmmm. ok. Then ill be there tomorrow. Goodbye." 

Tears. Hot, burning, tears. What other findings can be picked up by an amnio? Google became my biggest enemy that day. Cancer, Fatal Diseases...the list just got scarier as I kept researching. 

Those next 24 hours was full of anger, fear, acceptance. I remember being so mad at God. I promised Him that if He took her from me, i would never speak to Him again. Then I read Hannah's prayer to God in Samuel. 

10 Hannah was in deep anguish, crying bitterly as she prayed to the Lord. 11 And she made this vow: “O Lord of Heaven’s Armies, if you will look upon my sorrow and answer my prayer and give me a son, then I will give him back to you. He will be yours for his entire lifetime, and as a sign that he has been dedicated to the Lord, his hair will never be cut.[b]”- 1 Samuel 1:10-11

My prayer became like a bargain. A plea. A trade. Never in my life have I felt the need to actually get down on my knees and plead a prayer to God. He usually always meets me where I am at. But this time was different. I had never in my life prayed so hard, so passionately and so serious. My life was not my own. I was ready to give it up. To lay it down in exchange for my babes health. My life for hers. This is the moment I became a mother. A love I have never in my life experienced took over me. And by the end of the night, I was at peace with dying.

Now I know all this sounds so morbid and sad, and a little dramatic. But add some intense pregnancy hormones, my hormone imbalance, these dramatic situations, and an absent husband and you get an irrational woman. Plus 24 hours to mull over every possible bad scenario would make anyone crazy. But I truly believe that I needed to spend those 24 hours in the darkest hole I had even been in to come face to face with the reality I was about to be given. 

December 16th, 2015. " Now I know you say you don't plan on terminating, However.... Your results show that your daughter does have Trisomy 21....Down Syndrome". I waited... and waited... and still nothing.... 

"Thats it? Thats all the results say?" 

"Uhm. Yes?" 

"And theres nothing else? No other findings?"

"No?"

"Ohh...okay cool". 

"I...uhhh... Are you okay? I know this can be shocking. I have a cousin who has Down Syndrome and he's the favorite of the family. They are just so happy....." insert a bunch of non sense about how all people with down syndrome are the same happy go lucky people. 

"Yeah, Im fine. I have worked with people who have Down Syndrome. Their the best. Im not worried." 

I think my lack of emotion shocked him. And I think I shocked myself. Everyone I had talked to before we knew the amnio results, always shared with me how they had to go through a grieving process. The angry stage, before they could reach acceptance. I always waited for that part to hit me. But it never did. Now i know that part of the healing process is very important for a lot of people. Its necessary for most if not all. But because of my unique situation, after those past 24 hours, receiving "just" a Down Syndrome Diagnosis was my best case scenario. I was getting a shot at life with her. It was going to be a fight, but it was going to be worth it. 

A few short days after all this, Brian came home for 2 weeks for Christmas leave. He didn't know anything that had happened over the last few weeks. I remember being so nervous to tell him. I didn't know how, I didn't know when. But I will never forget his response. 

"So babe... while you were gone they found some things wrong with the baby. I had to see a fetal specialist, and there are some issues concerning her heart which resulted in me getting an Amnio to determine if she will have down syndrome or not... And she does." 

"So?"

"Soo... our child isn't going to be "normal". 

"Hannah... we already knew that. Me and you are the farthest things from normal... but she's ours and thats all that matters. Normals boring anyways" 

And that ladies and gentlemen... is why I love this man. 

While he was home, possibly 3 weeks after I had received the positive diagnosis, we were sent to Children's Hospital LA to meet with a team of fetal specialist who would do extensive ultrasounds on all of Adalines body. Mainly the heart, since that was our biggest concern. I remembering being so at peace, and once again just felt like she would be fine. After 3 hours of ultrasounds. the doctors came to me and asked me why I was there. I told them my daughter has down syndrome and they are concerned about her health. Somehow, ( All glory to Jesus Christ) in the past month from when the amnio was performed and her heart was clearly not developing, to this point and time, EVERYTHING was working as it should. He told me had I not done an amnio he would not believe he was looking at the organs and fetal development of a T21 pregnancy. My baby was healed. 


The next 10 weeks or so were a breeze. I finally got to enjoy my pregnancy and prepare for her arrival. Labor and Delivery was the best and worst experience ever. I was not nervous or scared at all. I was so calm and excited and so ready to meet this girl who had already changed my life. She was taken from me right away and put in the NICU, but mostly because of an infection she had because I had gotten sick towards the end of my pregnancy from traveling across country to Brians graduation, and transfer to AIT. 

Now, if Im being honest, I still didn't believe Adaline had down syndrome after the diagnosis. I honestly don't think I was in denial. I just think I was uneducated. I was really denying all of the stigmas I knew about Down Syndrome. Down Syndrome has never been and never will be, a way I describe my daughter. She is Adaline Grace. She is strong. She is a fighter. She is love. She is joy. She is flawless. So what...she has 3 copies of the 21st Chromosome. She is healthy, and loved and ambitious. She is changing the world. She is Adaline

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Things NOT to say to A Parent {of a Special Needs Baby}

So far my walk through this special needs parent life has been encouraging, apart from the doctors during my pregnancy. I have been introduced to wonderful mommas and dads who too share the bond of parenting a special needs child. The strength and support that comes from these wonderful parents is unlike anything I’ve ever seen. We are all complete strangers but we will go to bat for each other and our kids. We have a place to vent when family, friends and strangers have offended us with their loving but uneducated comments. For those that have offended, you most likely don’t even know you have, which is okay. We aren’t upset at you, at least I’m not. I’m aware this situation is something you’ve never experienced before and aren’t sure how to say things. It took me lots of tears and silent nights, and research to know how to handle this new life. And I’m still learning. I’ve struggled with writing this blog because I hate offending people or making them feel bad. But I was quickly reminded that I am my child’s advocate and defender first and foremost. So that means I might offend you too, but I do it out of love for my child so please don’t be angry with me. I know you love me and my child. 

As all new mothers have experienced the fragile yet life changing moments your child gives you, the feelings of being an inadequate mom sometimes outweigh the joy they give you. At least it does for me. When my baby cries, I stress out like she’s telling me I’m doing something wrong. (I know all babies cry, but I’m telling you mine doesn’t unless she’s very angry and ive done something wrong.) My heart instantly breaks, my eyes fight to hold back the tears, and my mind goes a million miles an hour trying to figure out how to be a better mom. 
Here is the first thing you should never say to any mom when their baby is crying: “What are you doing to that baby?” I know you don’t mean to make us feel bad with that question, but in a moment of already high stress and emotions you’re reminding us of how bad of a mom we already feel. Our child is telling us already, we don’t need you to too. Maybe instead ask us how you can help, or just let us deal with it on our own. We would never purposely harm our child or make them cry. And I know you already know that. Just sometimes there isn’t a place for jokes. 

When our baby is fussy or upset do not say “ohh, the baby just needs his/her grandpa/grandma/aunty/insert name.” We know you don’t mean to make us feel like we are failing at our jobs, but as a mom I am supposed to be the one who calms her fears or dries her tears. Instead those comments can make us feel like you think you could do a better job than us. Which maybe you could because you’ve been a parent before, but now it’s our turn. But instead, maybe ask if you could hold him/her so we can relax. Chances are I will be more incline to let you have her if I’m not feeling like a bad mom. 

“Oh let me do it”. Just like us as new parents shouldn’t help them roll over because they need to learn on their own, we too need to learn how to properly change a diaper, give a bath, feed them, dress them. Teaching is always a better alternative. 
This one is too wide of a topic to address each scenario, but just because you did something different when raising us does not mean how we do things is wrong. Each baby and parent is different and we will find what works for us. 
When speaking to a parent of a special needs child: 
Depending on what diagnosis you are dealing with the questions will be different. Some questions I’ve received regarding Down syndrome have seemed so outrageous to me I’ve realized how uneducated people are, so I can’t get mad. I simply smile and bite my tongue (most of the time). 
1. I didn’t know black/Asian/Mexican people could have Down syndrome babies? 

• well, surprise they can. It is not an ethnic created “disorder”. It is simply just how the genes mutated during conception. Down Syndrome babies can be white,black,brown, have green eyes or brown eyes, red hair or black hair. They are not limited in their appearance. Society already limits their ability, let’s not limit their traits either. 
2. Why doesn’t she look like she has Down syndrome?

• my daughter is 2 months old. She is a new born. She is not a DS new born. She is just a new born. Yes we are lucky enough to not have tons of health problems and spend most of our time in the hospital, but there are “normal” new borns who also spend a lot of time in the hospital. Not all Down syndrome children are the same. Just like not all “normal” people are the same. (And can we find a better common term to describe most of the population? Who determines what’s “normal” anyways. ) 
3. “She/He looks so downs/autistic/enter diagnosis when she does that ” 

• well, no she doesn’t. She looks just like her self. Down syndrome is not who she is or what she looks like. And I personally don’t ever want my daughter hearing that she looks like a certain label. She can look like any one of her family members or her doppelgänger, but that’s it. 
4. Her diagnosis does not and should not be all you talk about with her or me or your friends. If she was “normal” you wouldn’t say “my normal child is _______”. She is not and will never be my “Down syndrome child”. She is simply my child. Just like she is simply your granddaughter or niece or friend. Her diagnosis is not a talking point or selling point. We don’t need to warn others she has Down syndrome, it is not a disease or something to caution people on. Heck if they are strangers they don’t   even need to know. Again, you wouldn’t tell the store clerk “my normal child is turning 3 months tomorrow”.
If you have said any of these things please do not feel bad. I believe it is my purpose and Gods plan for me to be an educator and advocate for not just my child but all special babies and their parents. Being a mom is already hard work, so let’s make it easier on us parents of a special needs kid and educate our selves and think before we ask absurd questions. I’m also part of this. Down syndrome is not the only genetic disorder. It’s just the only one I’m educated on. I too would ask silly questions regarding things I don’t know if I had never gone through this journey. 
I know this is just the beginning of being offended and I will have to get tougher so I don’t break down every time these things happen. But it’s my job to address them and also make it easier for you readers to have a glimpse of what it’s like to be in our shoes. 
On a brighter note, If you are apart of Adaline’s army you are part of something bigger than you know. She has the most loving family and support system. Her grandparents are absolutely in love with her and so are her aunts and uncles. And well, her parents love her the most. And all of you are a huge part of her life even though she won’t meet all of you I wish she could. I know she will always feel loved and beautiful because of you. You have made me one happy and thankful momma. 

A Letter To My Daughter

My dearest Adaline,

I have tried writing this letter to you for months. But each time the page came up blank. Until now. I guess your birth inspired these following words. 26 days ago you made your grand entrance and lives were forever changed. My heart was introduced to a new kind of love. But our journey thus far has not been easy. We spent our first week together separated by 4 (tiny) plastic walls and 22 miles, which may not seem like a lot but in Southern California that could mean an hour or more. I wasn’t able to kiss you until you were a week old. You were poked and prodded with needles and IVs which you still have bruises from. But each day I watched you get stronger and I couldn’t be more proud. We are coming up on then first month of your life and there are so many things I already want to share with you.

First off, you are so loved. And as cliche as that sounds it is beyond true. The outpouring of love you have inspired from people all around the world who haven’t even met you yet is earth shattering. If everyone on the planet could meet you or know about you then the world would be a better place. ( I wish the presidential candidates of 2016 could meet you. I will explain that when you’re older.) And though you can’t “walk into a room” just yet, the room still lights up because of your presence. The second anyone sees your darling little face, smiles and joy fill the air. You my angel, are heaven sent. So when the day comes in the (far future) that we fight or a boy breaks your heart, remember these words and how overwhelmingly loved you really are.

Secondly, regarding that boy that may break your heart, for some juvenile reason, I pray you always remember your worth. You were created by the God of the universe. The One who broke the barrier between heaven and earth. He saw all the beauty (and turmoil) in this world and decided we needed one of you. An Adaline Grace Seadschlag. And oh my heavens, am I so glad He allowed me to be your mother. And when the time comes for you to be loved and taken care of by another man, I pray he won your heart by pursuing Jesus first. You are worth far more than gems and rubies. Only the purest of hearts deserves you. And that cannot be attained without him having a relationship with Jesus Christ. One where he will lead you straight to the arms of Jesus before his own. But lucky for you, you have a father who resembles this perfectly, so it will be easy to notice in the right man (in the far far future).

Thirdly, now that you’re old enough to be reading this we have probably experienced quite a few mother daughter moments. Both good and bad. I’m not perfect by any means, I’m actually a wreck most of the time, though that could just be from all we’ve been through these past 10 months. But I can promise you that your dad and I are doing everything we can to be the best parents to you. I know we will fail at times, and during the times when we succeed it is all thanks to God. I hope that we have more of the praising Jesus moments than the failing moments, but no matter what you are what inspires us to be the best parents we can be. I promise to dry all your tears, to help you conquer your fears, pursue your wildest dreams, and love you in all of your forms. I pray your eyes never see darkness and your ears hear only Gods promises, let your hands touch the lives around you, and your feet always lead you home. Darling don’t ever let your light burn out. This dark scary world needs your beauty.

And lastly, when you encounter the uneducated people of this world who decide to limit you, or tell you that you aren’t equal to them and put restraints on you, remember just how important and capable you are. Because since you were living in mommys tummy at just 14 weeks old you began to defy theirs odds and break their rules of science. You are brave, strong, important, valued, loved and capable. You are the daughter of the King. A Princess in every way. The world will not know what to do with your beauty and your “specialness”. But it’s our job to show them. You’ve already taught me so much, and shown me just how much I needed you. I can’t wait to tell you next month all the new things I’ve learned from you. I love you darling. Here’s to another day of love and kisses.

Love,

Your momma

Adaline's Birth Story

Adaline's Birth Story

On March 26th, 2016 at 8:05 am my life changed forever. Miss Adaline Grace entered this earth weighing 6lbs and 13 oz at 19.5 inches long. As my husband watched from his army barracks on FaceTime, our family of two grew to a family of three. The best moment of my life was quickly ruined by the worst moments of my life. I type this as my beautiful baby girl lays next to me (in her bassinet) making sweet sounds fast asleep, and my heart is bursting with joy. A feeling I feared I would never experience with her. After she was born the doctors took her away for “observation” for what seemed like forever. My sweet nurse Cindy finally asked me if I’d like to see my daughter, and she rolled me to this glass room. On the way there, I’ll never forget the looks I received from all the staff on the floor. At first I thought they were all moved to tears by her existence like I was. But I was soon going to find out exactly why the halls were filled with pitty. They rolled me into the “nursery” and placed her in my arms. The tubes in her nose scared me. But I couldn’t help but hold her close to my heart. Literally. I’ll never forget the doctor who told me she was going to be transferred to a different facility and need the NICU because she couldn’t breathe on her own and she had a pocket of air outside her lungs. I had about 30 min with my sweet angel before they took her from me and placed her in the scariest incubator thing I’ve ever seen and rolled her onto an ambulance. My heart shattered. Within the first minutes of her life she was being covered in wires and taken away in an ambulance. My baby. She was supposed to be being loved up on by all of our close family and friends. Hugged and kissed and constantly told how beautiful she is. But instead she was to be poked and prodded and left alone in an incubator. Her first night here on earth, she was alone and I was alone. No husband and no daughter. My womb was empty. I was empty. This was the first in 9 months I was alone. I was discharged as soon as they would let me go. The next week was filled with countless hours in the same uncomfortable chair, watching her heart rate, her respiratory monitor and her stats. I was told how to hold my daughter, when I could hold my daughter, that I couldn’t try breast feeding my daughter, I wasn’t even allowed to kiss her for the first whole week of her life. But none of that was going to stop us from being there everyday for as long as they would allow us. We got in the way, we made our selves at home and I did my best to mother my baby. When she was allowed to be touched and held, I made sure that I had her every second. Covered in wires and tubes and surrounded by alarms we somehow managed to bond. I remember falling into a deep sleep. Probably the best sleep I had in months. With her on my chest, this was the first time she was hearing my heart beat outside my body. Each night going home was torture. Tears were shed, I was mad at God and my self. I slightly still blame my self for her being in that place for so long. “If I had just taken antibiotics for that terrible cold I had for the last three weeks she would probably be at home with me by now” played through my head on repeat every night. Each day was an unknown. But God always showed up. Everyday she was improving. My little fighter. She needed me as much as I needed her. When I wasn’t with her I was watching all the videos we had just taken of her. My heart just wanted to explode. It took everything I had to not demand treatments stop and just bring her home. But sadly I knew I wasn’t the best thing for her just yet. These strangers were the ones taking care of her, replacing my job. Looking back on it I’m very thankful for them, but in the moment I would leave angry at them. Angry at the situation. Angry at my self. But I know this won’t be the last of Doctor appointments. My little one will eventually need more help than most and require more visits and tests. So they will be more like adventures for us. With each visit we will learn more about this little warrior God has blessed us with. She will challenge us, take us to depths of our heart we didn’t know existed, and allow us to see beauty through different eyes. She already makes me want to be a better person. A better mom, a better wife, a better daughter, sister and friend. I hope one day, you are blessed enough to encounter the amazing soul that lives in my precious Adaline. Though she be but little, she is fierce.

Boho Baby Shower

Boho Baby Shower

Saturday, February 20th – Miss Adaline Grace Seadschlags Baby Shower Here are some photos of the details from the wonderful shower. Shout out to my incredible mother who always goes above and beyond for all my events. And to Gabi who brought my pintrest board to life. I only supplied the vision. These two ladies made my dreams come true. My incredible father who financially made this all happen and my darling little sister who captured these photos. Viki Cane with Just A Little Dessert who always makes incredible cakes. I can’t ever have just one! For my wedding I had 5!! If you ever need a cake she is the best there is. Most of the food was bought from Whole Foods and since my dad sells orgainc produce we all also got some from his growers. As perfect as everything was, there was a small piece missing. My love, my hubs and my soldier. But I cant wait to show him all these photos when I see him. Plus, I was so covered and showered with love from so many people. Some of the (eldest yet fabulous) attendees were Adalines Great Great Grandma Joyce, Great Great Aunt Holly, Great Grandma Tina, and Great Grandma Tami ( my paternal side), Great Grandma Flora (brians paternal side) Great Aunt Kat (brians maternal side). Along with Grandma Cristina (my mother) Grandma Debbie (brians mom) Aunt Nastya, Aunt Izzi (my sisters), Aunt Rachel (my sister in law), second Cousin Katie and Cousin Avery. Along with so many loved ones Ive had the pleasure of growing up with these past 13 years, down to new friends who have left imprints on my heart. You all mean so much to me and Adaline is so blessed to have such a huge family. I cant say thank you enough!