Abby · Down syndrome

Abby’s Story

I wanted this to be so eloquent. I saw a blog where she talked about the birth of her Down syndrome child and it had amazing writing and professional photos. It’s amazing. If you want to be amazed, go there instead ( Here, I’ll just write about an amazing girl that was sent to us on June 5.

I would like to say that all of this happened after an unremarkable pregnancy, because that seems to be the trend in writing really great birth stories. But the pregnancy was remarkable all on its own. First off, that we even could get pregnant. Not that it had ever been a problem in the past. But after Peyton I had some issues. A lot of surgeries. Scar tissue. Deleting one ovary. I thought for the longest time that we were done having kids. We decided just to try- and got pregnant the first month- with twins.

(at 11 weeks)

I loved telling people we had twins. Not just the initial calls to family and friends, but to the checkout lady at Safeway and people at the craft fair I did in December. As much as I loved telling people I was having twins, I hated telling them that it was no longer the case about a million times more. At about 15 weeks along I went with my sisters and my mom to get an ultrasound done to determine the gender of the babies. Melanie asked me what I thought they would be and I said, “I just hope they’re both still there…” I had read about vanishing twin syndrome, but hadn’t thought more about it until that minute. I had had a doctors appointment just two weeks before where he heard both heartbeats. Most twin losses in pregnancies happen before the second trimester- and well before you can hear both heartbeats. When we went in to find out, it was very clear that there was only one baby. We don’t know when we had lost the other one. From the ultrasound it looked as though it was about 8 weeks, but my OB says he thinks it was probably right after that appointment, and that the measurement of the twin we had lost was off because my body was already in the process of ‘taking care’ of it. It really didn’t matter to me when we lost it. I had gone two months telling everyone I knew that we were having two, and now I had to take it back.

Losing the twin was a lot harder on me then I thought it would be. We found out while we were in Utah right after Christmas. We decided to cut our trip a couple of days short and go home. I moped. I thought it shouldn’t have been as hard as the miscarriage I had before I had Carter, because at least this time it didn’t end the pregnancy. But it was tough. I went from it being a
superspectacular pregnancy that everyone got so excited about back to being, well, normal. I hate normal.

26 weeks

From there it was unremarkable. I didn’t have any of the regular screening tests done for chromosomal abnormalities because
1. I couldn’t. They can’t with twin pregnancies and 2. Like every one of my other pregnancies, it wouldn’t have made a difference. We did have the regular ultrasounds. The ultrasound that sucked because we found out we lost the twin was also so so great, because we found out I was finally, after three sweet boys, having a girl. Bust out the pink.
The boys visiting me in the hospital after I spent two horrendous days
on magnesium to stop Abby from coming too early.

After stopping labor at 35 weeks, and two more weeks of labor coming and going I finally felt as though the time had come. It was about 2 in the morning. Lance and I had only been in bed for an hour or so and I woke up to contractions every couple of minutes. I tried to go back to sleep. I’d been having contractions in bunches like this for the last couple of weeks and just as soon as we’d get ready to go to the hospital, they would stop. This time they didn’t. They were coming about a minute a part so I woke up Lance, who was resistant too. He didn’t think it was really happening either, that or he was just really really tired. So after a yelling at, he rushed over and grabbed the neighbor and we went on our way.

When we got to the hospital they checked me, I was dilated to 4cm and having contractions every 2 minutes. They quickly grabbed the anesthesiologist for the epidural- thinking we only had a little while until the baby came. It was less then 45 minutes from the time we got there until I was sitting comfortably numb from the waist down (I went drug free with Peyton. I’m beginning to think that’s why we’re BOTH crazy). Lance cozied up on the couch with his flannel and I spent the rest of the night slowly watching the contractions go away. By morning time the doctor was about to send me home before she noticed that I already had an epidural. I was technically not full term because I was two days shy of the 37 week mark. She started pitocin. Nothing. More and more pitocin. More nothing. So she broke my water. Thirty minutes and two pushes later, Abigail Lori was born.

The feeling in the room as she came into it was amazing. It was like everything got brighter. And slower. The brightness may well be explained that it had rained for days prior to her birth, was sunny the day she was born, then started to rain again the day after. But the stillness in what should have been madness, the peace in what was chaos, could simply be inexplicable. It’s not. As I was waiting for her to arrive the night before I heard voices in my room. I got up and asked, “hello” but there was no one there. The only words I could make out were something like, “the baby will be born.” The big heavy door to my room was shut tightly. The voice was female and didn’t sound like snoring, so it surly wasn’t Lance. I had the strongest feeling that Abigail would be accompanied by angels when she was born. It was unmistakable. And she was.

But I should back up even further. Back to the almost unremarkable section of my pregnancy. The only remarkable thing about it was that I kept having the feeling that Abby had Down syndrome. Not just that something was different about this pregnancy, but clearly that she had Down syndrome. I kept brushing these feelings off as if they were the workings of a crazy woman. I was a crazy woman at the time. Hormones aren’t kind to me. But the feelings persisted. Then I thought it was because we were supposed to, in the future, adopt a child with Down syndrome. I talked to my good friend Mandee, who has adopted two children and is waiting to have another come into their home, about it. I told my sister. It’s funny, because at the same time I was having those feelings, so was Melanie (but not about me). She had even had a dream where she saw herself at a hospital bed with a dark haired girl and a baby with Down syndrome. She thought it meant that she too should adopt a child with Down syndrome. But the feeling that Abby was the one who had Down syndrome only grew stronger with time. I even imagined how I would tell my mom, and how I would tell Carter. I still just thought I was just being weird. I wish I could learn to calm my life and my mind down so that those feelings, the workings of the Spirit, can really take center stage. Either way, I’m glad that I heard some of them. I was being prepared.

Abby was placed on my chest as soon as she was born. I recognized her features. But not as mine. Not as Lance’s. As Down syndrome. She hadn’t been out of me for more than a minute when I knew that the feelings I had had weren’t me being crazy at all. But I waited. I didn’t want to say anything because I didn’t want people to think…anything…really. I didn’t want people to think that I didn’t like the way she looked…all babies come out looking a little like aliens anyways. They took her from me to clean her up. The pediatrician and the team from the nursery were there. Lance moved from my side to hers, and kept standing in front of me as I was trying to see what was going on. I had to move him several times. I kept thinking I should ask if they saw anything in her, but decided over and over again just to wait it out. She didn’t cry much after she was born, and that worried me too. They tried to get her to cry some more but she didn’t. She came out. Squealed for a second or two then was awake and pleasant.

They wrapped her up and handed her to me at which time the pediatrician took a seat next to my bed. The room tilted a little, but I was still amazed at how bright it felt. And fuzzy. I couldn’t see Lance, who had moved back to the other side of me, because I had a nurse right next to me. Looking back, I have no idea why the nurse was standing on that side of me. She was the delivery nurse. I had finished delivering. She stayed by me. She knew, too.

He started out by telling me that she was healthy. But then he said the words, “but her features would suggest that there’s a problem…” before he could continue I said, “she has Down syndrome.” He looked at me and said, “yes, she has Down syndrome.” Time slowed down even more. The room became even more fuzzy. The nurse at my side bent down and wrapped her arms around my shoulders, then moved out of the way as my husband moved in. He sat next to me and took my hand. The tears came out but didn’t last. It seemed as if there was way too much happiness in that room to cry. Too much joy. Coming from the baby. From my sweet husband. From the people who were there that we just couldn’t see.

My sweet husband. From the second she was born he had an amazing bond with her. He loved her instantaneously and deeply. He told me later that he couldn’t really gauge what I was feeling, and if it were sadness, he felt like he really couldn’t emphasize with me, because he was so happy she was there. He would leave to go get me something I needed from the store or to sneak me a soda- and would be gone for longer than I thought he should be. Always he would come back- after stopping at the nursery to be with Abby.

We only had about ten minutes with her until they took her to the nursery for observation. The told me it would only be a couple of hours and then they’d bring her back to the room. A couple of hours passed, then a couple more. I went to the nursery with the hope of bringing her back to the room myself, but that wasn’t going to happen. More waiting. They told us that for sure we’d be able to have her in the morning.

While we waited Lance and I just kind of sat there and marveled at this gift that we had been given. When I would get those feelings that she had Down syndrome, I would think, “what an amazing thing if she did. It would be God’s way of telling me that we were doing a good job with Casey.” My son Casey has autism. He was diagnosed when he was 18 months. It’s been tough. But it’s been so wonderful. I think that’s also why weren’t so overcome with grief when we found out that Abby had Down syndrome. We knew how tough it would be. But we knew how much the good outweighed the bad by what a blessing he was in our lives. I’m a different person than I was before Casey was born. I’d like to think it’s made me better. It’s definitely made me tougher. It’s made me go way out of my comfort zone to get Casey the best care we could. To fight. We knew we could do this, because we already had. We didn’t feel the weight of grief with Abby the same way we did with Casey. Finding out you have a child with a disability changes EVERYTHING. I grieved the loss of “what could have been” for a long time with Casey. It took me a long time to understand that what was left was probably even sweeter than I had imagined. And it has been.

The feelings I had about this being God’s way of telling us what we were doing with Casey were still there, but a stronger feeling came up. Abby doesn’t need us the way we need her. We need to have this beautiful spirit in our home. We need to have some more peace in a house with three crazy boys. We also felt so strongly that we needed to be better. Better parents. Better people. Better at living the Gospel of Jesus Christ. We need a constant reminder. And we have one that we can hold in our arms.

We started making calls soon after she was born. I knew what I was going to say because I had rehearsed it back when I thought I was crazy. I called my mom first. For some crazy reason, my brother Travis was there with her, too. I asked if she was driving, (not a signer of Oprah’s phone pledge), she wasn’t so I told her Abby had been born and that she was perfect, and that she had Down syndrome. My mom was shocked and a little sad for about a minute. My brother didn’t miss a beat. He was so comforting. He told me we were perfect parents for this perfect little girl. He said everything I needed to hear.

I called my older sister Melanie next. Melanie LOVES children with special needs (you can see one of my previous posts about her being the autism whisperer with Casey), but Down syndrome in particular. She even went into Special Education to be closer to these kids. She’s wanted one of her own forever, and like I mentioned above, has looked into adopting a child with Down syndrome. One of the first things she said to me was, “You’re SO LUCKY.”

We called all the rest of both of our families. No one skipped a beat. Everyone was just so excited that she was here, that she was healthy, and really, that she had Down syndrome. We are lucky.

First thing in the morning I headed down to the nursery. Abby had a rough night. She stopped breathing as well as she should have been and an x-ray showed she had some fluid in her lungs. They had put her on oxygen and had to move her to one of those incubator things. She also was having a tough time keeping her body temperature regulated. At this point they thought she’d be in the hospital for a couple of weeks.

I immediately knew I wanted my mom there- but I also knew that she would have to give up a vacation in California with the entire rest of the family to do so. I didn’t have to ask her to come though, she just did. I’ll be forever grateful for the sacrifice ( with the vacation, her time, and the crazy amount of$$ she had to spend to get her flights changed twice) she made to come help us. I needed her there. Not just to take care of the boys, but to take care of me.

My mom with Abby

Abby only had to spend five days total in the hospital before we were able to bring her home. It was a long five days. I love this picture because it shows what I did those days. Sat in a chair with Abby, trying to stay awake and failing. She was just so peaceful it was hard to not nod off while I held her.

While she was in the hospital they did the genetic testing, tested her hearing and her heart. The heart part was the scariest for us because about half of children with Down syndrome also have a serious heart defect. Abby had a EKG and then an echo cardiogram. She does have a tiny heart defect (an atrial septal defect for those in the know…) but it should take care of itself with time.

Abby having her EKG
Abby getting her echo cardiogram

The pediatrician on call was kind of a tool. He was great about telling us that she had Down syndrome, but every time we saw him after that I wanted to punch him. He told us to not worry too much until the genetic testing came back- that there was a small chance she might not have Down syndrome and just “a weird face.” I could have killed him. She didn’t have a weird face. She was beautiful. So amazingly beautiful. He just couldn’t see it. A couple of other nurses and doctors said, “I’m so sorry” and I would tell them there was nothing to apologize for. We have been blessed with a miracle. But they were the minority. Most of the doctors and especially the nurses were so so fantastic. Every single nurse I had for my postpartum care went and saw Abby on their own. I had long talks with the lactation consultant (who I was actually trying to avoid due to my inability to like nursing) about how Abby was closer to God. Anyone who held Abby could feel it.

Every single friend I had who stopped by was just excited for her to be here. Maybe even more so that we had a baby that was so special. No one missed a beat. Every friend I had served their own special purpose during this time, and I’m so grateful for that. I’ve never felt so loved in my entire life.

It’s almost been two months since she was born. I can’t say that every day since has been easy. That I haven’t been at times a little overwhelmed at the thought of the extra care she’ll need. The extra battles for services. The many trips to specialists, to therapists and to Early Intervention. But I’ve done it all before, and am happy to do it again.

I’m just so grateful. It’s still amazing to me how perfect everything works out. I have my perfect little family. It shows me that even though we have our free agency, God still has a better plan for us then we can create for ourselves.

He gave me the most amazing son Carter who is as selfless and as service oriented as his father. He loves to help. He’s great with his brothers and loves Abby with all of his heart.

Then there’s Casey. Casey has taught me patience, forgiveness and a love that I didn’t know could run so deep. He’s autistic, but there’s so much more to him. He’s sweet and he’s cuddly. He loves without reservation.

And Peyton. Peyton is my comic relief. He’s stubborn and he’s kind of a pill…but I kind of love that about him. He gets away with a lot because he’s so cute. I was most worried about how he’d handle the baby. I shouldn’t have been. He loves her. Every time he sees her he gets right up close to her and says, “Goochie little baby.” I’m not sure what “Goochie” means, but I love it.

I really feel like I can handle what ever life gives me if I have my husband, Lance. He’s sooo good to me. He’s so good to the kids. He is my calm. He is my patience. He is my best friend. I love him more with every child we have, with every trial we go through, and with every year we’re together.

There’s really no way to end this post. I have so much more to say. I had an awesome shower with forty of my favorite people. We blessed Abby with almost all of Lance’s family here along with a wonderful surprise visit from my older brother. All of these will be upcoming posts, but for now I’m done. Life is good.

33 thoughts on “Abby’s Story

  1. I'm stalking you and I'm proud of it. I have to say I love this post. I felt the spirit while reading this. Abby is absolutely beautiful and you are the right mom for this precious little spirit.(Jen Allen)

  2. so glad I popped in and read your blog. Thanks for sharing your experiences and miss abby's birth. IT makes me feel all warm and fuzzy 🙂 I needed that

  3. I LOVE your story! I have also facebook stalked you! You crack me up and even though I don't think we have ever had a conversation… I really like you! The way you talk to other people, and well to yourself… hilarious! I heard that you were no longer pregnant with twins so I was curious about how you were (from afar) but geniunely concerned for your sweet family. When I saw her precious face I knew in an instant she had Down's… and I smiled!! I also have a SUPER dee duper soft spot for down's kids! One of my best friends just after high school had a baby sister with down's and I absolutely ADORED her! I would spend the night just to snuggle with her! I still to this day donate to special olympics every year because of that soft spot! I would love to meet her… I have something for her! Just thought I would confess to my stalking and thank you for sharing your story. But well now I need some tissue! 🙂 Tears of joy you know! Enjoy her! I know you will!

  4. I'm so glad to read a birth story about a baby with Down syndrome where she wasn't met with grief. My husband and I celebrated our bear cub from the beginning and hope that more babies are received that way. I'm looking forward to reading more of your story in the future.

  5. Wonderful wonderful story. It is a privilege to be given kids with special needs. When our angel was born, the feeling in that delivery room was like none other – the walls literally felt like they were going to burst because there were so many other spirits in that room with us. I was reminded of the intensity of that feeling as I read through your story. Thank you for sharing!(nurseheidi1 from BBC)

  6. Lexi, I confess. I have been blog stalking you since you posted the cute vinyl tree you made for Abby's room. LOVE IT!Abby's birthstory is just beautiful! It brought tears to my eyes the feeling that surrounded her arrival to this earth. How blessed you all are to have each other! Thanks for sharing. Sarah (Wadman) Jarman

  7. Thanks, Lexi! I feel the Spirit everytime I read your posts about Abby and your family's experiences. I can just tell you have the Spirit with you and a lot of love in your home. Even though it won't be smooth sailing everyday, as you well know, that Spirit and love will be a great strength. Thanks for sharing!

  8. abby is a very beautiful litle girl and she is strong. your story was very inspirational to me. Don't thin down syndrome is totally un normal abby is blessed and will have a beautiful life I've seen kids in worse position. I know a kid who has down syndrome and she's the most high spirited kid and funny kids I've ever seen! She keeps everyone laughing and they act like people. Keep your head up and you'll see just oneday that she made a difference in your family life!

  9. I have chill bumps from reading your story!God has a perfect plan. And He absolutely knew Abby was being sent to the perfect family!! She is beautiful!!

  10. I just found your blog and got chills reading this birth story. It is beautiful. I had twins in March of this year and one of them has DS. I wish my reaction to the diagnosis had been as beautiful as yours. It wasn't but I adore my son and wouldn't change him for the world. I also had feelings that I would have a child with down syndrome but thought I was being crazy and paranoid. I saw his face in an ultrasound and knew and then dismissed it. Your blog is an inspiration and I am happy I found it!

  11. I found your blog through A Holy Experience and I really enjoyed reading this heartwarming post. It brought back such memories for me. Our son has Down's Syndrome too and he has been a huge blessing in our lives. We are better parents because of him and I just loved reading your story. I agree with you when you said that we as parents need these special children even more than they need us. He is eleven years old now and what an amazing journey it has been so far.God Bless you and your family,Kathleen

  12. Wow! I just read Abby's story and I am just in awe.! My daughter is also Abbie and like you, I just knew she had down syndrome. We did have an amnio and I remember the doctor telling us on Easter that she had Trisomy 21. I cried, but not because she had Ds, but because I was shocked that my "crazy hormonal visions" of a baby with Ds weren't crazy. Thank you for sharing your family!

  13. After reading this I am even more glad that we finally "met" via our blogs. You are a beautiful woman inside and out and your baby girl is absolutely perfect.Also, I want to track down that on-call Pediatrician and put a pile of steaming dog poo under his driver's seat.

  14. What a wonderful birth story! I love how the Lord prepared you and you accepted Abby with open arms. My SIL also has a Down Syndrome baby and had a very similar experience when he was born. You know what she said? "I'm the luckiest mom". I think she's right. There is something special about children with DS. They are joyful and add so much fun to our lives. You truly are lucky.

  15. OK….so I found your blog after reading "Mama's Losin' It" and being drawn to your link about your snotting experience (lol)….After reading that post I knew I had found a blog worth following- -but then I started browsing and learned a little more about your story. Your children.I'm speechless, really. You are an incredible woman and an inspiration to me. Absolutely my new favorite blogger. Can't wait to keep up with your story.

  16. Somehow I stumbled upon your blog, and I am just blown away. What a strong woman you are, and what a faith you have. God loves you a lot to pick you to handle so many challenges and blessings at one time! I will definitely be following. You ARE inspirational!

  17. What a beautiful story! Birth stories almost always make me cry but this one was especially powerful and poignant. Thank you so much for sharing it.

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