Every woman finds out about the diagnosis in one of two ways, either during pregnancy screens, or at birth.  Adrienne found out via a Prenatal Diagnosis of Down Syndrome, meet her and her beautiful Jett.

I found out I was pregnant in March 2016, we were sooooo excited!  The completion of our blended family was on the way.  I was 39 and I’m a nurse so I knew my risk factors. 

Everything was going smooth and my general OB sent me to high-risk just “to be safe”. I’d had 3 other babies that were full term huge babies so I felt it was just a necessary precaution because I was “advanced maternal age” (which I HATE THAT TERM).

So we went to the appt, saw the genetic counselor who seemed cold and quite matter of fact.  Then it was off to the US room, I was 22 weeks 2 days.  My husband was sitting in the chair and we were oohing and aaahing over our bugs on the screen.  The US tech was measuring away and I was none the wiser.  Then that question “have you done any prenatal screening blood tests?”  I looked her dead in the eye and immediately knew what she was talking about.

In comes the OB who was rather unfriendly and hurried.  She lays it all out there ” your baby has a thick nuccal fold, what looks to be a few heart defects, short femurs and no bone in his pinky”.

Just like that, what was such a happy day became one of the darkest days I had.

The next 15 minutes were a blur as an amino was done, and I left with a bandaid on my belly and a 48 hour agonizing wait for my FISH results.  In my heart I already knew, my baby had DS.

I got the call from the genetic counselor 2 days later while at work.  I was not nice to her at all, she delivered the news I already knew.  I left work and drove home to my husband and sobbed for 2 days.  I was 22 weeks 4 days.  I was so angry and sad.  Sad that the baby I had imagined was no longer going to exist.  My fears were; EVERYTHING!!

I may be a seasoned nurse, but I knew nothing about Trisomy 21 and what was going to be my new “normal”.  My initial fears were his health.  I had to wait 3 weeks for his fetal echo, which wasn’t as bad as initially thought.  Every ultrasound was nerve-wracking, what was she going to find today?  My strong boy was killing it in the womb!!!! He was growing and measuring right on time!  We even have a picture of him raising his fist like “look at me Mommy, I’m strong”!!

Every US that passed I began to feel more at ease with my baby and his health.  I just needed to know that when he was born he was going to be ok.

We elected to not tell anyone except immediate family.  Honestly, I couldn’t deal with the immediate “I’m sorry” response.  I didn’t know how to respond to that without waterworks that I couldn’t control or stop.  It was just easier for me to keep it to myself.  A little part of me felt robbed by a prenatal diagnosis it just put a damper on being able to enjoy my last pregnancy.

The other part of me, the Nurse part, needed to know everything….so that I could process and cope.  I’m not gonna lie, I researched “false positive amniocentesis results” until I was purple.  There is no arguing with science, but I tried.

My husband, wow, he handled this like a champ.  He held me, comforted me and all the while kept telling me how awesome Jett was going to be.  To say that he handled it better than I is the understatement of the century.  He told his parents with a smile on his face and was proud, while  I was still sobbing in the car.  He was the one who told me daily that it was going to be ok.  Our parents were both incredibly supportive.

This pregnancy, despite my advanced age, (insert eye roll) was a breeze!  I felt good, honestly this was my easiest pregnancy.  I was induced at 39 weeks 5 days which was my choice, I’ve never gone into labor on my own.

He was my easiest delivery.  I got pitocin started at 7am and Jett Joseph Michael arrived at 10:14pm weighing 7lb 14oz and was 21 inches long.

HE WAS PERFECT!!!!! 

It was in that moment that I held Jett to my chest and he looked at me, was when I knew it was all going to be ok.  Jett got his echo at 18 hours old and that’s when he was taken to the NICU.  He had pulmonary hypertension, ASD, VSD, patent foramen ovale and a patent ductus arteriosis.  He needed high flow oxygen to help reverse his pulmonary hypertension.  I knew he was going to be ok, but the Nurse in me knew there was a slew of things that could go wrong.

Jetty spent 7 days in the NICU and got to come home on December 22.  The best Christmas present I have ever gotten!  His siblings were obsessed with him!

My husband made a Facebook post after Jett was born telling the social media world about our diagnosis and how we would like people to think of him.  It was amazing to get support from everyone and a huge relief that our “secret” was public knowledge.  I was not ashamed of the DS  diagnosis but I struggled with the awkward conversation that occurred after I told someone.  I wouldn’t change the way we did things, it worked for us.

It’s funny, everyone that came to see Jett would say “I don’t think he looks like he has DS”. I would just smile and say, but his chromosome do!

I had only known one other person had that a child with DS.  Ironically she used to babysit me when I was a kid.  I reached out to her when I found out and she gave me the single most important piece of advice I ever received.

She said: ” love that baby like you loved your others, he’s just a baby”.

She told me to enjoy every second and to NEVER compare him to other babies DS or neurotypical, that it will rob you of the here and now.   THAT WAS SPOT ON!!!  She also told me to read the poem Welcome to Holland.  I still can’t read that without crying,  because I have such an awesome tour guide!!

RELATED POST: WELCOME TO HOLLAND- INTERVIEW WITH THE AUTHOR

My life has changed, boy has it ever!!  In the beginning, it was specialist appointment after appointment!  Now that he is a year old my life has settled down.  We have lots of therapy appointments and a few Dr checkups. Jetty is growing and changing daily!   He will do things when he is ready and not a moment sooner.

The one thing I wish I could change is to go back to that woman who was 22 weeks 4 days and give her a hug and tell her it’s gonna be ok.  To embrace the new normal, give her a gentle shake and tell her to snap out of it!!  This club is by invite only!! #theluckyfew

RELATED POST: MY BABY HAS DOWN SYNDROME- NOW WHAT?

Adrienne has been a Registered Nurse for TWENTY YEARS!!  She works in Interventional Radiology and loves her  job.  Adrienne lives in Las Vegas and has 5 amazing kiddos; Sydney 17, Alyssa 15, Ian 14, Izabella 10 and Jett 1 who was born with a lil’ something extra.  When asked about hobbies Adrienne says: “In my spare time…. hmmmm wait, I don’t have any but I wouldn’t want it any other way!”  You can follow along their journey on Instagram @Pretty_fly_for_a_Jett_i

After undergoing fertility treatments for our first two children, my husband and I had decided that our next child we would hope for but also chose to be content with the two beautiful children we had. Eleven months after our second daughter was born I became pregnant with our third child.

As soon as I found out I was pregnant something felt different that time around. We went in for our 20 week ultrasound hoping to find out the sex of our baby. I had enough experience through friendships to know that this ultrasound is not just about finding out the gender. Our little peanut kept crossing her legs to make it difficult to determine that she was a girl! We were excited to find this out and the ultrasound tech gave no indication of things being different.

A week later I went in to follow up with my doctor and it was then that she told me that our baby’s nuchal fold, which is the skin on the back of her neck, was thicker than most babies. This can be an indication of Down syndrome. At the time there was a blood test that could screen for your chances of having a child with Down syndrome. I had always declined these tests but my doctor threw out the term stillborn enough that I freaked out and took the blood test. I called my husband on the way home from the appointment in shock. He assured me that it doesn’t matter what this baby was like that we would love her.

Awhile later, my doctor called to let me know that my baby had a 1 in 10 chance of having Down syndrome and that she would like me to see a specialist to monitor the baby. She delivered the news very calculated and even apologized as if she had told me my baby was going to die. I remember calling a friend whose daughter had Down syndrome. We had been connected previously because her daughter with DS wore hearing aids and our second daughter does as well. She assured me that all was good and even coached me on how to best share this news with friends and family. It was a great phone call!

I honestly can’t say I was surprised that we were having a daughter with Down syndrome. I can look back on my life and point to moments where I had a gut feeling. After my second daughter was born deaf I remember a friend telling a story of a woman who had a mentally handicap son. She also had another son who was an Olympic athlete. This son’s brain was injured during an accident and he became like his brother. The mom said she was so grateful for her first son who was mentally handicap because it then helped her know how to care and love her second son who became injured later in life. That story really hit me because of the experience we had learning how to parent a child with a hearing loss. When our baby girl, Ada, was born I knew we were prepared.

Ada was born into this world quickly. I remember looking at her and knowing she had Down syndrome. Not because of her eyes or anything obvious. I just noticed she was floppier and felt different than my other two. The nurses and the doctor knew Ada may have Down syndrome but no one said anything and they treated her like any other baby. Our pediatrician was not able to come until the following day. In the mean time, Ada was not eating well. She was very sleepy and weak. When I asked the nurse caring for us if she thought the baby had Down syndrome she said it’s a strong possibility. Ada had very low muscle tone and there was a crease in her hand that can be an indication.

Friends and family came and went and no one had any suspicions. On the second day our pediatrician walked in and said “Congratulations on your baby girl!” I finally had to ask if she had Down syndrome. He said that all signs pointed to the fact that she did but that they would do a blood test to confirm.

Upon arriving home I wrote a letter to all our friends and family delivering the news with excitement and hope. This really set the tone for most people on how to interact with our family. There have been times of grief for my husband and I as we realize things that are different than we had hoped in our minds. That first year my husband grieved more than I did. After he acknowledged his sadness he was able to move on and quickly Ada became a light to him.

I, on the other hand, go through stages of grief at various times. There are things in my head I had no idea I expected until I realize that Ada does not fit that mold. This really happens when Ada is moving on developmentally. For example, I didn’t realize that I had hoped that Ada would speak sooner than most. For example, maybe my baby with Down syndrome would be a super talker! And, then when it takes longer than I had hoped I then realize I had an unspoken expectation even unspoken to me. This journey has taught me to acknowledge this, forgive myself, and keep on loving Ada and me.

Ada is almost 6 years old now. She has taught us who our community is, what is important and ultimately how to love with no bias. When Ada was born the word we chose for her is JOY! She has taught us how to live our lives more joyfully and how to love unconditionally. These are great gifts that may have taken us longer to receive without her.

Ann resides in the Mitten State with her husband of 15 years. They have three daughters who are all very special with their youngest sporting an extra chromosome. She writes a blog called Counter Culture, which focuses on her counter cultural life where she spends her most of her time, at the counter.  You can follow her on Instagram @charmaluca or on Facebook