“I never really knew what it meant to be a true advocate for a child until we had our last.
We were sent to the hospital for a low resting heart rate and suspicion of Down Syndrome. After arriving at the hospital shortly after our daughter Amadeus was born, we were greeted and taken care of quickly. The nurse that was getting our information at check in was harsh and rude and couldn’t believe we delivered her at a birth center and after she checked her body temperature, she quickly whisked her away without warning, leaving me (in a wheelchair because I had just given birth a few hours earlier), my husband, and my oldest daughter (age 8).
Courtesy of Amber Rojas
Moments later the nurse came back and instructed us to quickly follow her. We entered in a room full of nurses and saw our sweet new little baby, clothes cut off and hooked up to every machine you could imagine. I looked over to my daughter standing beside me and you could see the fear in her eyes. No one was talking. I finally yelled out ‘HELLO!’ A nurse finally came over to explain what they were doing that my daughter was struggling to hold a good body temperature and they were concerned for her heart.
Courtesy of Amber Rojas
They wanted to keep her but only one of us could stay. So, my husband and my daughter left. I wasn’t about to leave my new baby at the hospital alone with no answers. That night I googled and read up as much as my brain could hold about Down Syndrome. We didn’t mention the possible diagnosis to anyone, because we wanted to make sure it was confirmed before we talked about it. The first few things I remember reading was that their lives span were short. I was devastated! Here I was, just had a baby, no one can give me any answers and I was alone without my family. This was not what I had planned. This was not how I planned to spend my maternity leave. I wanted to be there to see if my older kids (ages 10 and 8-year-old twins) were okay. I was better at answering questions than my husband, but I still felt so helpless!
Photo by Dream Focus Studios
3 days later and no answer about the body temp but they did confirm that she did have a heart defect that would require Open Heart Surgery. The next words that I hear are ones I’ll never forget. The Doctor came in and said, ‘I’m sorry mom, but your daughter does have Down Syndrome.’ Not once in the hospital did a nurse or a doctor congratulate me on my new precious daughter. They saw a Diagnosis, and that was it. The Doctors and nurses spent the next few telling me the things my daughter may or may not do in her life to come, all the while I missed my family like crazy and tried to recover from having a baby in a hospital that didn’t even have a bed for me to sleep in. All I wanted to do is take my baby home and start this new unknown life together as a family.
Courtesy of Amber Rojas
We were sent home a week later with a beautiful baby girl with Down Syndrome and we didn’t care because we loved her and were completely obsessed. Not knowing she was going to have Down Syndrome, or a Heart Defect was a lot to take on because you not only have all the typical baby well checks, but we now had a list of other doctors she needed to see as well.
We weren’t going to tell our kids because we didn’t want them to worry about her diagnosis, but decided it was a good time. They were so confused because they didn’t see her diagnosis, all they saw was their sweet baby sister. I told them ‘her heart will be fixed one day and that she will show us what it means to have Down Syndrome. Just like anyone else she is just as able and capable as anyone, but it may take her just a little more time!’ My oldest daughter took it the hardest. I even remember her wishing Amadeus could be born again and this time without Down Syndrome. I told her to just give it some time. They were all a bit worried but later fell in love with the fact that she has Down Syndrome and what it’s done for our family so far.
Courtesy of Amber Rojas
We were finding our groove of adding a new baby to our group, now a family of 7. Still learning anything and everything we could about kids and families with a child who has Down Syndrome. We joined a group called DSDN (Down Syndrome Diagnostic network) and they have become like family. Since having our daughter, we have lost a few friends and family members with the diagnosis, but we’ve gained an incredible tribe.
Dec 7th, 2017 my daughter started to struggle to breathe to the point she would completely stop. My husband and I weren’t sure what or how to do. Especially since we had no one we could call for help. We decided the best option was for me to take her to the hospital and he stayed home with the other 4. That car ride over was the scariest time for me. Winter season takes the lives of many babies with Down Syndrome especially the ones who were smaller and didn’t have heart repairs yet. I cried and prayed to God the whole ride over for him to please not take my daughter away. I kept stopping to check to see if she was still breathing. I kept thinking ‘I just have to make it to the hospital, I just need to make it to the hospital.’ Finally making it to the hospital parking lot Ami’s coloring was terrible and I knew they could see it in my eyes as I entered the door of the hospital carrying my limp daughter. The only words I could say was, ‘She has a heart defect.’
Courtesy of Amber Rojas
They quickly put her and I in a room and again her clothes cut off and hooked back up to all the machines. They started ruling things out, but she was definitely in heart failure. I just sat there helpless and alone again. Finally, the next day test results showed she had RSV. RSV also takes the lives of many typical babies, so I was worried beyond belief. It was again so hard because I was alone without my husband, but he was taking care of the big kids and he had to work because medical bills were starting to stack up.
Since being in the hospital and because each breath was a struggle, they gave her a feeding NG feeding tube, so she didn’t have to work for her food (before she exclusively nursed and had never taken bottles) and also less work for her heart. They also gave her ANOTHER diagnosis. This one ripped my heart out! Failure to THRIVE! I couldn’t and wouldn’t believe it! She was doing amazing! She’s just sick! She will get thru this. I have never shed as many tears as I have when I would replay those words over and over in my head. 20 days later and after celebrating our first holiday, Christmas in the hospital, we were released to go home with a feeding tube and to make it to our heart surgery. That meant 6 weeks of a clean bill of health.
We were released into the biggest Flu outbreak we had ever seen! And with 5 kids, 3 that are in school, 1 at Daycare, my husband and I both work, and families that didn’t understand, it made it almost near impossible to stay healthy. We turned down anything extra. Holidays, birthday parties, dinners…. We didn’t do anything that we didn’t HAVE to do!
Feb 26, 2018; our 6 months old daughter now 12lbs. A thriving baby was handed over to the Surgeons to begin her 6-hour heart-repair. Before surgery they explained in detail about stopping her heart, cooling down and warming up of organs to make sure nothing is lost. 6 hours went by and we heard nothing. Finally, in that 7th hour we got word our baby girl was out of surgery and they had started warming up her organs which takes about an hour. I remember being scared to take my other kids to get their teeth worked on but now after this that seems so silly. 8 hours later we got to see our girl. She did amazing and we were released a week later.
Courtesy of Amber Rojas
After her surgery we began sharing our lives with the world and shining a light on Down Syndrome! Amadeus has shown all of us that Down Syndrome is just that – a diagnosis. It’s not who she is. She is Amadeus, our daughter.
Since Open Heart Surgery she has overcome so much. So many things the doctors told me she wouldn’t do. Before this point she couldn’t even put her own hand in her mouth without gagging and couldn’t even tolerate tummy time because she had zero endurance or strength. She started therapy late because of our long stay in the hospital for RSV. We had to set a goal and it seemed so far away, but I wanted her to be able to sit unassisted and eat her birthday cake for her first birthday. That gave us 6 months.
Photo by Dream Focus Studios
In that 6 months our life was back to ‘normal.’ We were able to get out of the house and be around people. We’ve taken many road trips, family outings and even her first family vacation to the beach!
Her FIRST birthday came and I’m here to report she was sitting and eating Her FIRST BIRTHDAY CAKE! Our daughter is INCREDIBLE! I get approached on Instagram and on Facebook by moms and dads on how we have helped them with their diagnosis of their babies! We’ve been told we have saved lives and possible terrible decisions by just sharing our precious daughter, our family, or our regular life THRIVING WITH DOWN SYNDROME! We aren’t going to let any medical professionals tell us what she can’t or won’t do. She will show us and everyone else what she is capable of doing. She is worth the wait.
Courtesy of Amber Rojas
This story was submitted to Love What Matters by Amber Rojas of Dallas, Texas. Follow her family journey on Instagram here. Submit your story here. For our best stories, subscribe to our free email newsletter.
Read more powerful mothers of children with special needs:
‘The doctor knelt beside my bed with our baby. ‘There are things I want to point out to you.’ Those words hit me hard. ‘No she’s perfect. That’s not possible – she was already tested for that.’
‘Trisomy 18.’ ‘Incompatible with life.’ ‘Why would anyone want a baby like that?’ I didn’t understand how the baby so full of life within me could be THAT sick.
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647 Shares Tweet Email Amber Rojas, awareness, CHD, Compassion, Courage, disability, Down syndrome, Down Syndrome Advocate, extra chromosome, family, health, heart defect, heart surgery, love, Love What Matters, mom, Mom Life, mother, motherhood, Parent, parenting, strength, Trisomy 21 ‘The police said, ‘If she gets caught using drugs, THEN it’s our problem.’ My sister was missing and vulnerable. I just wanted her back.’: Woman searches 20 years for addicted sister, ‘In looking for her, I lost myself’‘It was bottle after bottle. After 32 years of marriage you would think he would have walked away because he had every reason to.’
Source: lovewhatmatters.com
