My pregnancy with Wesley was somewhat unexpected. I had suffered a miscarriage at 10 weeks in September of 2014. I was devastated. It had been about 3 years since our 2nd son had been born and we were more than ready to welcome another baby into our home. This wasn’t my first miscarriage. I had had one before my 1st son was born and I knew the doctors would tell us to wait 3 months before we started trying again for another baby.
Fast forward to November of 2014. I realized one day that I hadn’t had my period yet and decided to take a pregnancy test… and I was shocked to find out I was pregnant! A range of emotions swept over me but mainly fear took over. Fear of having another miscarriage because we had gotten pregnant so soon.
I scheduled a doctor’s appointment and they saw me at 6 weeks to confirm the pregnancy. I saw a little heartbeat and was somewhat reassured. I wasn’t able to go for another doctor’s appointment until 12 weeks along because we had switched insurances. I was so excited to see our little one moving away and to see a nice strong heartbeat. At this visit, the doctor asked me if I wanted to do prenatal testing for chromosomal defects. Normally I decline these tests, I did with my first two sons, but something was different this time. I felt very strongly that I should do the tests. Especially after the doctor mentioned that part of the first test included an ultrasound, a nuchal translucency ultrasound to measure the fluid behind the baby’s neck. I was all for another ultrasound to get another chance to see my baby again so that sealed the deal. I got my blood work done that day and waited to hear back from radiology.
The ultrasound was scheduled for the following week since it was done between 10-13 weeks. I didn’t think much of it. I scheduled it during the morning while my boys were at school and my husband was at work. I had decided to go by myself because I just knew nothing was going to be going on with my baby. Well, I was wrong. I drove to Sacramento to the genetics counseling office where they did the ultrasound. I had the nicest technician and she was so positive throughout the whole ultrasound. She explained that the results would be read at that moment and that I would be meeting with a genetics counselor to go over my blood work and ultrasound results. I was called back about 20 minutes later and my world felt like it was turned upside down. The counselor started off by saying, “Based on your blood work and the ultrasound today we found out your baby has a 1 in 5 chance of having Down Syndrome, and that includes the possibility of a heart defect as well.” I couldn’t believe what I was hearing. She continued to go over the results and what all of it meant. I wasn’t able to process hardly any of it besides the mention of Down Syndrome. She talked about options, including abortion, but I stopped her right there and said that wasn’t even an option in my book. This was my baby and I was going to have this baby regardless. She mentioned that the second part of the blood test would need to be drawn around 18 weeks and I decided to turn it down.
I didn’t want any more statistics. I decided I would wait until my 20 week scan and based on findings then, we’d make a plan. I held it together for the rest of the meeting and then walked to my car. I broke down and I cried all the way home. I tried calling my husband when I got home but he was unavailable, so I sent him a text informing him that I got some not-so-great results and to call me when he had a chance. I called my mom next and broke down again explaining to her all that I could remember. She was positive though and reassured me that everything was going to be okay, that even with the odds, our baby was going to be just fine.
It was a long 7 weeks before our 20 week scan came. In between that time I did a lot of praying that all would be okay with our baby, that he wouldn’t have Down Syndrome. My husband came with me to this appointment. We had the same technician and once again she was so pleasant to talk with. We found out we were having another little boy and were so excited! It was so wonderful to see him moving and to see his heartbeat. I had forgotten for a moment about why we were there and enjoyed seeing my baby.
Once again, the results would be read right then and there. We waited about 20 minutes before the doctor came in. She introduced herself and dove right in, “We have found some things going on with your little guy…”. I felt like my heart stopped beating and I just held onto my husband’s hand. She explained that she saw several soft markers for Down Syndrome, including limbs measuring a bit shorter, a bright spot on the heart, and an absence of the nasal bone. She said the hard marker for Down Syndrome they found was the thickness of the back of his neck. And they also found extra fluid around his heart, a condition called pericardial effusion. She told us she couldn’t officially give us a Down Syndrome diagnosis without having an amniocentesis, but that she felt very strongly that our little guy did have it. She expressed concern over the fluid around his heart and told me I needed to come back in another week to measure the fluid again. If the fluid increased we would have to talk about options to relieve that pressure around his heart, something else I totally wasn’t ready for and one more thing to stress over.
After the meeting, Scott and I walked to our car and the moment we got in, we both broke down. I asked Scott what he was thinking and he expressed his concern over what kind of future Wesley would have and what did that mean for our future as well? Would Wesley do activities that typical children do, like playing sports? Would he be in a traditional school setting? Would he go to college? Would he be able to serve a mission for our church? Would he ever marry? Or would Wesley be living with us for the rest of his life? How would this affect his relationship with his brothers? I didn’t know how to answer any of his questions and I had thought of those same questions myself. But, I think the thing that scared me the most was the condition with Wesley’s little heart. The thought that if the fluid continued to increase and that we might have to do surgery to drain that fluid scared me. The fact that even if they did drain the fluid there was a chance it could come back. After we expressed those questions we didn’t talk much the rest of the way home, all we did was cry.
Once we were home, Scott had to take off to work. He said we’d talk more when he was home later in the evening. I continued to cry at home and I did was any other girl would do, I called my mom. I cried and cried and expressed all my worries to her. She stayed calm and offered words of comfort and continued to reassure me that no matter what, everything was going to be okay. I didn’t know how she could stay as calm as she was but she told me “Kasie, I just have a feeling. I feel that everything is going to work out as it should and that it’s going to be fine. His heart is going to be fine and if he has Down Syndrome, he’s going to be fine.”
The week was kind of a blur. All I could think about was the next ultrasound and Wesley’s heart. I continued to pray that week and I prayed like I had never prayed before. I asked my husband and my father-in-law to give me a priesthood blessing, something that’s done in our faith when someone might be sick, worried, or just needing some comfort. I remember after the blessing a peace that came over me and I was told not to worry, to trust that everything was as it should be. The week went by slowly and finally it was time to go for another ultrasound. The scan went pretty quickly and the results were read right away. The doctor came and I tried to stay calm. She smiled at me and said, “Your baby boy’s heart looks beautiful. The fluid has decreased to a normal amount. The only thing we need to discuss is if you’d like to do an amniocentesis to determine if your baby has Down Syndrome.” I smiled back at her, I was so incredibly happy to hear Wesley’s heart was perfect. As far as having an amniocentesis done, I turned it down. I felt strongly that I didn’t need to disturb his perfect little environment. The results of the amniocentesis wouldn’t change our minds about our baby.
I came home in a much better mood now knowing that Wesley had a healthy heart and other than some soft markers and one hard marker for Down Syndrome, I started to feel some kind of peace with it all. I prayed and continued to pray throughout my pregnancy for peace and comfort with whatever was to come. There was still a small piece of me that had this hope that Wesley wouldn’t have Down Syndrome though. And talking with family members they were very hopeful that with his 1 in 5 chance of having it that that 80% was a strong enough chance he wouldn’t.
Fast forward to my appointment with my doctor at about 26 weeks. All was going normal until he measured my uterus. He paused for a moment and did the measurement again. He then looked at me and said I was measuring at about 30 weeks. He expressed concern that I might have extra fluid that was making me measure bigger, and with that factor that could be another indicator of Wesley having Down Syndrome. He expressed that a concern would be that the extra fluid could cause early and more frequent contractions, and told me to be very observant when it came to contractions. Well, one week went by and sure enough, I started to have contractions that wouldn’t go away with a change in position or drinking fluid and resting. I had to go to Labor and Delivery and found out I was already dilated to 1cm. They gave me medicine to stop the contractions and monitored me and told me I could go home but that I needed to be on a modified bedrest. But because I lived on the third floor of our apartment complex I wasn’t to go up or down the stairs unless it was to an appointment.
A few weeks later when I was 32 weeks along, I started to have more contractions that weren’t stopping even with the medicine I was given. I went to L&D once again and found that I was dilated to 3cm. I was admitted and they immediately ordered steroid shots to be given to help Wesleys’ lung development in case he was going to make his entrance early. I had to stay for 2 days because I had ended up dilating to 4cm, but the doctors were able to get the contractions under control and I was able to go home, still ordered to stay on modified bedrest. I was super stressed at this point because I had a 5 year old and 3 year old I needed to take care of. Thankfully I have the best family and friends ever who stepped in to help me at a moment’s notice.
During this time of being on bedrest I reflected on all that had happened so far and decided to read a little bit on babies with Down Syndrome and what to expect. It was during this time that I felt a personal confirmation that yes, Wesley had Down Syndrome, but that it was all going to be okay. Our family would be okay. I read many stories and a lot of families went on and did every day activities. Having a child with Down Syndrome didn’t change any of it. In fact, all of the stories I read said that having a child with Down Syndrome had changed their families for the better. That they felt this love that they never thought possible. Having a baby with Down Syndrome was no different than having a typical child. All they need is to be cared for and loved as any child would.
It was around this time that I came across the Instagram account @nothingdownaboutit I started to follow her and read about her journey with her son who has Down Syndrome. And you know what, I actually started to get excited for our family. I saw the closeness that this family had and the relationship between her daughter and son. There was so much love being shared and her son was just as any other child. Sure, he was hitting milestones a little later but when he did reach a milestone it was celebrated as a huge accomplishment and it’s so very exciting! This woman’s account became my comfort and I knew our family was going to be just fine! More than fine, our family was going to be just as it should and it was going to be wonderful.
I went into labor at about 37.5 weeks pregnant and I was more than ready to welcome this baby into our family. My labor went fairly smoothly and Wesley was born at 12:21a.m. on July 7, 2015 weighing 6lbs 13oz. They laid him on my chest as they started to clean him off and I hadn’t seen his sweet little face yet. But my husband noticed that he was turning a little bit purple and that’s when they took him from my chest to be examined by the respiratory team. I wanted so badly just to hold me little boy. While they were working on them I could hear the team whispering and I knew what it was about. I knew they were whispering about Down Syndrome. Sure enough a few minutes later a nurse came over to me to explain that Wesley’s oxygen levels weren’t holding very well and that they needed to take him to the NICU. The nurse also mentioned Wesley was showing features of Down Syndrome. I looked at her and told her, yes, I already knew he had it even though it wasn’t confirmed by an amniocentesis test. She asked my husband to come along with her while they took Wesley to the NICU. I could see my husband crying. My mother-in-law was present for the birth and she came over to me with tears in her eyes as well. She was able to get a picture of Wesley for me since I hadn’t gotten to really see him yet. She showed me his picture and sure
The nurse also mentioned Wesley was showing features of Down Syndrome. I looked at her and told her, yes, I already knew he had it even though it wasn’t confirmed by an amniocentesis test. She asked my husband to come along with her while they took Wesley to the NICU. I could see my husband crying. My mother-in-law was present for the birth and she came over to me with tears in her eyes as well. She was able to get a picture of Wesley for me since I hadn’t gotten to really see him yet. She showed me his picture and sure enough you could see features of Down Syndrome, but past that I was looking at my son. My sweet little chubby cheeked son who I just wanted to cuddle so badly. I wasn’t sad about his diagnosis, I was more worried about his health and oxygen levels. My MIL expressed that Scott was having a hard time and reliving when we had first received news of his possible DS diagnosis weeks ago. Later, Scott expressed to me that he had had that hope that Wesley wouldn’t have DS, so when he saw Wesley for the first time it brought back that flood of emotions and concerns.
Wesley spend 14 days in the NICU due to his oxygen levels. It was a long 14 days and was one thing I didn’t prepare myself for. I was torn having to leave Wesley at the hospital and torn from having to be away from my older 2 sons and husband. It was a very stressful time but I cherished every moment I got with Wesley at the hospital and the moments I was home with my sons and husband. My husband had a hard time coming to visit Wesley in the NICU. He loved him very much but he hadn’t quite processed that Wesley had DS, but that would quickly change.
Wesley had quickly won over all the nurses in the NICU. He was the big baby of the NICU. and everyone just wanted to snuggle on him. His cheeks were to die for and he just had the sweetest disposition. Wesley had the best nurses ever and every time I had to leave I knew he was in the best care possible. At the end of his 2 week stay, we did receive the official diagnosis of Trisomy 21, Down Syndrome.
My 2 older boys were so excited when we got to bring Wesley home. We told them about Wesley having Down Syndrome and tried to explain it the best way we could. They had wondered why he hadn’t come home with me right away. I know they didn’t understand what we had explained, but they were just so excited to have their baby brother coming home. They showered him with kisses on his cheeks and asked to hold him whenever they could get a chance to. Once Wesley was home, everything just felt so right. He was meant to be here and be in our family. My husband was quickly won over as well and while it took him a little longer to process it all, he loved Wesley so much and it was so sweet to watch him interact with him. Wesley has been the most easy going baby ever! He has definitely been my easiest baby!
Wesley just celebrated his 2nd birthday and we honestly can’t imagine life without him and his bonus chromosome. He has the sweetest and funniest personality and a smile he wins you over with in a second. Sure, we’ve had some challenges here and there but it doesn’t change our love for him. He’s hitting his milestones on his own time and we celebrate them as he does! All those worries and questions we had initially have gone away. We take it day by day and know that in the end, Wesley is going to do amazing things, in his own timing. He’s here to teach our family as much as we are here to teach him. We love Wesley so much and are so excited to see what the future will bring! It’s a journey I’d never thought I be on, but one that I am so glad to be a part of now! Our family and friends have been nothing but supportive and have shown Wesley so much love. He’s a charmer and will quickly win over those who he meets!
Kasie lives in the Sacramento, Ca area with her family, husband, Scott, and 3 boys ages 7, 6, and 2 and a new baby girl, due in September. You can follow her on Instagram @kasiee13