Search Results for: down syndrome 101

A day in the life of Down Syndrome- Caleb’s day

January 4, 2018 by Guest Post 5 Comments

a day in the life of a little boy with Down Syndrome

I remember all too well when I first learned of the diagnosis, Down Syndrome, and wondered about the impact it would have on our lives, my family, our future. It was all terrifying to me in the beginning. But, it has been people like Caleb’s mom, Karen, who have allowed me to see glimpses of the future, what our life might be like, by sharing their children with the world. Recently Karen did an instagram story on a day in the life of her son Caleb, I watched it over and over and then asked if she would do a special one for all of you out there who might also enjoy it.

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A Perfect Daughter, A Down Syndrome Diagnosis, and a Young Mom

December 20, 2017 by Guest Post 5 Comments

A Perfect Daughter, A Down Syndrome Diagnosis, and a Young Mom.

It always surprises people when a child is born to a young mother and then receives a Down Syndrome diagnosis, Whitley was no exception. At 24 years old, there was not even a thought in her mind that her daughter would surprise her with an extra chromosome, even a negative quad screen assured the young mom that she was getting ready to give birth to a typical baby. However, there is nothing typical about the amazing, beautiful, and stunning little Miss Adley.

Adleys story

At our twenty-week anatomy ultrasound, we had a scare. The ultrasound tech could not find our sweet baby’s stomach on the ultrasound. As she continued to look, I noticed she was also spending a lot of time looking at her brain. They had found a CPC (Choroid Plexus Cyst) on her brain. The doctor came in my room to explain that these are “pretty normal” in most growing babies and it should resolve on its own. She then explained that, with these two findings, there was a very low risk that the baby could have a genetic disorder. She was not concerned about a genetic disorder because of my age. I was “too young”.

She recommended that I have an ultrasound follow up, and a blood test (just to ease our minds) and if the cyst had not resolved on its own she would send us to a specialist.

Once again, she stressed not to worry because she was confident that it was nothing. Being a mother, of course, I worried. I didn’t originally want to be tested because it would not have mattered either way. I went ahead and got the blood test because it would be no harm to the baby.

We got the Quad Screen results in the mail the next week. The letter read that I had tested negative for all that the blood test had tested for, which are Trisomy 21, Trisomy 18, and neural tube defects. The ultrasound was clear of any cysts and they found her stomach. We were so relieved! All of the stress and worry was gone and we honestly never thought about it again.

Fast forward to July 23rd, I was 40 weeks and 3 days pregnant. We went in at ten o’clock that night to be induced. Our little sweet pea was being stubborn and did not want to come on her own. We were not there for long at all and Adley decided that she was ready! I had such a short labor and a fast and furious delivery. I pushed three times and there she was.

July 24th at 8:20 a.m. our six pound three ounce beautiful Adley Grace came into the world. Austin and I both looked at each other with tears of joy and happiness in our eyes as our new baby was laid on my chest. Shorty after they realized Adley was not breathing, she was quickly taken over to the warmer to be suctioned and bagged. Extra help was called into the room where they all stood around our little girl. The mood in the room changed as I heard many whispers coming from the nurses that were examining her. I remember not being able to see her because of all the medical team in the room.

As 30 to 40 minutes passed(which felt like hours) my baby girl was finally being wrapped up by the doctor to bring her over to me. Not only had our lives just changed so much, little did we know it was about to change so much more. The doctor knelt down beside my bed with our new baby and said “Adley is going to be okay, but there are some things I want to point out to you. There are some features that lead me to believe she has Down Syndrome.”

Those words hit me hard. My first thought was no she’s perfect. That’s not possible she was already tested for that. I remember the only thing I could say was “okay” as I took Adley from her.

It was all a big blur to me after that moment. I held her trying to hold back tears. Doctor after doctor came into our room to examine our new baby just to tell us over and over again that they did believe she had Down Syndrome. Every time one would leave I found myself in tears again. My heart was broken. Adley was not even in our room for two hours when her oxygen levels and body temperature started dropping. A nurse and doctor came in again to explain that they decided Adley needed to be taken to the NICU.

I was scared, tired, disappointed, and vulnerable. I would go to visit her in the NICU and try to see what they could see. She looked just like me. Yeah, her eyes were almond shaped, her head was small, but so were mine. Her little ears and nose were perfect. The big gap between her first and second toes were just like her dads. Each time I would go back to my room and cry. This was not how it was supposed to be. I was grieving the perfect baby that I had in my head for ten months. I went through all of the grieving stages in a very short period of time. I felt alone. I knew no one with or nothing about Down Syndrome besides an old outdated view of what I thought she would never get to do or be. I felt pitty for not only myself but her. I wanted to know why us. I remember telling Austin that I did not believe it. The doctors were wrong. I wanted her to be tested for Down Syndrome as soon as possible because i was not going to believe it without the positive results.

The night the doctor came into my room when Adley was only two days old my pity party quickly ended. He told us Adley wasn’t doing well and would need to be flown out to a bigger hospital. Adley had developed PHTN(Pulmonary Hypertension). He gave us ten minutes to decide between two different hospitals that were both hours from our home. Not knowing much about either, I prayed I would pick the best one for her. I knew right then that my daughter needed me. She needed me to be strong for her. She needed me to be her mother. Adley needed me to love her just as she was, with or without a diagnosis.

So that’s exactly what I did. I rode on the helicopter with my daughter to the nearest Children’s Hospital while not taking my eyes off of her for a second. That’s the moment I actually became her mother. I saw her and not her diagnosis.

We never left her side the forty-five long hard days she spent in the NICU. By the time her test results came back that she did indeed have Trisomy 21, it did not even matter to us anymore. We loved her so much just as she was. We grew closer in our relationship and closer as a family during those long days Adley spent in the NICU. We came to realize all that mattered to begin with was her health and that we were blessed with a beautiful baby girl.

Adley is now almost 5 months old and all I know is God doesn’t make mistakes. I now know why us! She is perfect in every single way. Adley is the daughter that I’ve always dreamed of and more! She is my reason, my person, and my best friend. Every time that sweet baby grins at me, It reminds me I was made to be Adleys’ momma and her advocate for life. I’ve always wondered what my purpose was here on this earth and I’ve finally found it. Considering that I had a 1 in 830 chance of having a baby with Down Syndrome, I would say I am a pretty lucky person.

I have been truly blessed with the sweetest, most precious baby girl ever. She is SO smart and determined to do anything! Adley has so much love and happiness to give. She has saved me in many ways possible and I can not wait to see where this journey takes us. I know that she will do BIG things in her lifetime and I can not wait to watch!

If only I could turn back time to what I know now! There would not be any time wasted on her diagnosis. We would have just enjoyed our new baby just the way she was. Looking back now to that negative Quad Screen test, I am truly thankful for it. Not that it would have changed the fact that we were still going to have a perfect baby girl but we got to miss out on a lot of unnecessary stress. We never had the unnecessary worrying while I was pregnant. No unnecessary stress of what our future was going to hold. No doctors trying to talk to us about the unimaginable. Just love at first sight!

We now know what pure happiness is. My heart is so full!

Whitley Nicole is a 24 year-old mom living in Arkansas and engaged to her other half. Whitley graduated as an LPN and more recently an RN. Right now she is a stay at home mom, and it is her new favorite job! You can follow Whitley and Adley on Instagram @adleys.momma321

Life is Forever More Beautiful Because of Down Syndrome- a Twin Story

November 29, 2017 by Guest Post 2 Comments

My name is Jessica. My husband, Jared and I were married in 2011. We decided to start having children right away and we now have four children, Raymie age five, Kyrie age three, Nora and Jack are twins and they are eight months old. My husband and I are originally from Idaho, but we currently live in Iowa. My husband is a mechanical engineer and I am a nurse, but currently a stay at home mother. We love the stage of life we are in right now. My husband is very fun and loves to get the kids all riled up (of course right before bedtime). Jared and I go well together, I am more of the nervous, cautious type, and he is a lot more fun and relaxed. At one point we had four children age four and younger. Sounds chaotic, and at times it is, but I am always told “wow, you have your hands full”, But there’s that saying…you should see our hearts.

I went to the doctor appointment alone, it was our third baby, we knew the routine and I would show the pictures to Jared later. During the ultrasound, I thought I saw two sacs, but I instantly put it out of my mind. There was NO WAY I would have twins. Well, the ultrasound Tech told me otherwise. I instantly started to cry. Ugly cry. I didn’t see this coming. We were thinking three MAYBE four children. But, God had a different plan for us. The Tech told me to go use the restroom so that she could get a better look at it all. As I was in there, I remember giving myself this pep talk that wasn’t so peppy in the mirror. It consisted of a lot of, “no way this is happening” and “is this really happening”. As soon as I was done with the doctor’s appointment I called Jared to tell him the news. He didn’t believe me, at all. In fact, his exact words were “yeah, well we’ll see”. You have to know my sarcastic and humorous husband to know that this was really funny that he didn’t believe me. I didn’t believe it myself. The rest of the pregnancy went really well. No complications, all ultrasounds (three or four of them) looked great. I was HUGE.

The delivery had gone so well. I was induced at about 6am. The babies came easily with no C- section. Nora was born at 11:29am and the first thing I said was “Awe, she’s beautiful”, as they whisked her away to be monitored and checked. Jack came six minutes later at 11:35am. The pediatrician came over to talk to me about the babies and said, “The boy looks good, but we have some concerns about your girl. We believe she has Down Syndrome.”

She handed Nora to me and said, “See her almond shaped eyes, her lower set ears, this line on her hand?” I remember the way I felt, but it’s hard to describe. We were still in the OR, (that’s where we had to deliver, just in case we needed an emergency C-section). I wasn’t mentally, let alone, physically stable to receive this type of information. You know that heart sinking feeling you get, I believe it was that. The look on Jared’s face as soon as they told us is burned into my memory, left there as a scar forever. It wasn’t a bad look, or a sad look. It was a look of shock that I can’t seem to get out of my mind. They then rolled me and Nora to our room, while Jared walked next to Jack. I believe we sat in our room for 30 minutes without talking because so many nurses were in and out checking/testing the babies. The nurses would duck in and out, quickly and quietly doing their work. The word was out. The girl that had the twins has one with Down Syndrome. As they would leave I would burst into tears and try to quickly recover as soon as they would come back, even though I knew they knew and my face was swollen and red from the tears and crying. I wasn’t trying to hide Nora’s diagnosis; I just didn’t know how to react yet. And the only way that came to me, was tears.

Jared texted family and close friends during this time and was looking up some information on Down Syndrome. The first thing he said, when we were alone, was “They live for an average of 60 years.” I know that sounds morbid and I’m sure he was looking up other information as well, but I proceeded to cry as he comforted and reassured me that this is something we can do. Jared is a lot stronger than I am. I had told people about the day I was getting induced. A good handful of people knew the babies were coming that day. I’m sure there were a few people wondering what was going on, they knew we had had the babies but had heard nothing. I felt like I had to give everyone answers and updates right away, but I couldn’t even do that for myself.

Daycare and a Baby with Down Syndrome

November 6, 2017 by Guest Post 8 Comments

As this is not my area of expertise, but many moms face going back to work and finding appropriate care for their little ones with Down Syndrome, I asked our community of friends on Instagram to share their experiences of having a child with Down Syndrome and utilizing a daycare center. Rachel, a beautiful mama to Isla and Sullivan, works full time and has had a fantastic experience with her current daycare center.

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Down Syndrome Diagnosis in a First Time, young mom

October 30, 2017 by Guest Post 1 Comment

Down Syndrome diagnosis in a first time mom, it is an anomaly that can occur in any pregnancy regardless of age, race, culture or socioeconomic status. Though it is true that the incidence of Down Syndrome rises for older mothers, that doesn’t mean that young mothers are unable to bear a child with Down Syndrome. When a mother, especially one under the age of 25, finds out she is having a child with Down’s Syndrome, that Prenatal Down’s Syndrome diagnosis in a young mother often becomes a huge shock.

The beauty of Taylor’s story, however, is her embrace of the diagnosis and the life she and her family lead with little Treg as their tour guide.

Here is Taylor’s story:

I remember that my husband and I were sitting in a room for our 20 week check up. We were talking to the doctor about why we got charged $2,000 dollars from a lab company for blood work, after all, we had denied all testing.

But at about 16 weeks a nurse came in and took my blood. We asked her why and her response was “its routine, we need to check your blood type, and send all your blood work information to the hospital for delivery.” Somehow my blood work got sent in for quad testing. (Now I thank God that it did, he truly has a hand in every detail of our life).

“Look, guys, I know you were wondering about the bill from the lab company, but it’s pretty much mandatory we do these testings now…. and listen we got the results okay? And, we need to discuss what was found…

You got a positive result for Down syndrome on the testing. How it works is that it takes your blood and factors in a bunch of information about you, and if one thing is wrong, like the conception date, it can mess the whole testing up. I’m sure it’s okay, he won’t have it okay? You are so young, the possibilities are like none.”

I stopped hearing at this point, I was focusing on holding back my tears, I could hardly breathe, the room became really small, and I just couldn’t breathe.

I wanted to shout at the doctor to shut up and leave. What was he even saying at this point? At least Jordan was listening (my husband).

Then it dawned on me…Jordan is still here… I looked up into his eyes, “Sorry” That’s all I could say. I was so sorry. I wanted to give my husband what I thought was a “perfect baby” and I failed, so over and over again, I just said, “I’m so sorry.”

“Don’t cry okay? Your baby won’t have Down syndrome, everything is okay. I can offer you another non-invasive test, but I really don’t think you need it, this will just give you peace of mind.” So I immediately got my blood drawn for cell-free DNA testing.