Guest Post, Author at Cedars Story

Open Heart Surgery and Down Syndrome

January 11, 2018 by Guest Post 8 Comments

I posed some questions to moms who have been there, ones who have seen that the heart defects that their little T21 designer babies have, would likely cause them to leave this earth far too soon without life-saving Open Heart Surgery.

These are the moms who have had to give up control, because the situations were out of their hands. These are the parents who have to rest in the prayer and hope that their little ones are in the best hands, with the best surgeons. They pray that their precious little babes will return to their arms with a repaired heart that will allow them to live a full and happy life.

I posed the questions; they gave the heartfelt and true answers…

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Amelia’s Story: A Birth Diagnosis of Down Syndrome

January 10, 2018 by Guest Post 1 Comment

Amelia was born by elected cesarean, due to her being a breech baby and she was quickly whisked away from us before I even got a cuddle her. This was due to her having low oxygen levels at birth. It was a few hours later that Amelia’s dad was presented with the news that the doctors suspected Amelia had Down syndrome, he then had the job of coming back to see me and to tell me the news.

Amelia’s pediatrician didn’t come up to talk to us both together until a lot later in the evening. My initial reaction to Michael telling me was just shock, and I apologized to him.

A lot.

I felt it was my fault, that I had failed her somehow whilst being pregnant. Then by the time her doctor had come up to speak to me, my feelings had turned to anger, and I quickly dismissed her from talking to me about it. It took a few days and a lot of cuddles from my princess and talks with her dad to realize how ridiculous I was being. I work with children and adults with various disabilities, some who have Down syndrome; and I’ve seen how amazing their lives are – I didn’t need to be upset or angry, I needed to be proud of her and I was!

It was once we got home from our three-week stay in hospital that I could look at Amelia and see a baby, not a baby who has Down syndrome. I think it took me this long as everything was focused on Amelia’s diagnosis whilst we were in the hospital; once we were home I had my baby, not a Down syndrome baby.

Once we were told Amelia’s diagnosis was confirmed, we were bombarded with doctors telling us all the negatives, all the health issues, and all the developmental delays that we would face from the beginning.

This was a major concern for me, and something I struggled with I again began to feel guilty. Had I done something when pregnant that gave my little girl health complications? It turns out again I was being ridiculous. Amelia has no other health conditions and she keeps up well with her milestones, proving her pediatrician wrong each and every time.

Amelia’s dad, Michael, has been the best support I could ever ask for. He never let me see him get upset or stressed, he was more interested in making sure Amelia and myself were okay – he was the positivity that we both needed to get us through those initial days, to get us past the sadness, guilt, and anger. It wasn’t until later he admitted he had gone and had a cry in the car by himself.

Having Amelia has made us be more honest with each other, more open about our feelings. We realized early on that this is how we need to be; if one of us is having an off day and we’re concerned about anything the other quickly picks us back up.

Our family and friends have been amazing since day one. It was obviously a shock to all, but once all understood what Down syndrome is it became a lot easier for them. It’s made it easier by them all feeling able to ask the questions they need to. Open communication is definitely the key!

Amelia is now six months old; she rolls over, sits unassisted, enjoys playing with anything that lights up and makes a noise, she loves her food and is desperate to be on the go.

I don’t think it really matters when you find out that your little one has Down syndrome, the grief is something that everyone will have to go through no matter when you find out; and for us it wouldn’t have mattered if we had a prenatal diagnosis. The only thing that could change the response would be how the doctors communicate with parents; the focus needs to come away from just talking about the health and development issues; and bring in the positives, change the language used (Down syndrome is not a problem), and offer all the available support that there is out there!

Hi. My name is Kirsty, I am a first time mummy to my amazing Amelia-Rae and living in Berkshire, England. I decided to start sharing Amelia’s story on Instagram @rae_oft21 after reading reports on hopes to eradicate Down syndrome through new testing; and realized that us DS mummies need all the help we can get to spread awareness about how amazing our little ones are. As much as I’m all for prenatal testing, I think people need to be more informed about what the future would hold for them to be able to make an informed decision before deciding to abort their baby.

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