Monday, February 6, 2012

Abby | A Postnatal Diagnosis

This is about an amazing girl that was sent to us on June 5.

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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.

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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.

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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.

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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.

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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.

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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.

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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.

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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.

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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.

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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 (I have talked before 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.

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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.

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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.

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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.

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Abby having her EKG

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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.

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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.

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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.

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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.

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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.

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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.

Contributed by Lexi at Mostly True Stuff

Sunday, February 5, 2012

Joel | A Prenatal Diagnosis

January 26, 2007, was a day I will never forget. On that cold day in January, I sat in stunned silence as a doctor told me and my husband that the 18 week ultrasound of our second child revealed a number of serious concerns.

The doctor described for us a number of “markers” she saw, including a small nasal bone, a cyst on the brain, a spot on the bowel, an increased nuchal fold, and some fluid around the heart. There was also the possibility of the baby having a cleft lip. As we sat and listened, all I could think about was that this could not be happening to me. The baby I had waited so long for could not have so many things wrong with him.

The doctors talked about some decisions we would need to make. They thought all of these markers were pointing to either Trisomy 21 (Down syndrome) or Trisomy 18 (which would most likely be fatal). We needed to decide if we wanted an amniocentesis done to determine if our baby did indeed have either Trisomy 21 or 18. The outcome of the amniocentesis test would then lead us to another decision. If the baby had either Trisomy 21 or 18 we would need to decide whether or not we would continue the pregnancy.

My husband and I spent a lot of time in prayer in the days that followed, as did many of our close friends and family. We decided to have the amniocentesis test done and on February 12, 2007, I received a phone call that I can replay in my mind today, almost word for word. "I'm calling to let you know that the amniocentesis test results came back and I'm sorry to say that your baby boy has Down syndrome". I can't remember what I said but I remember the genetic counsellor asking "you indicated that you would not terminate this pregnancy regardless of the outcome is that still your desire". I said yes, hung up the phone and went completely numb.

The days, weeks and months that followed were so hard. I questioned God's purpose and I questioned my ability to handle a baby with Down syndrome. The hardest part for me was wondering how this would affect my son Caleb (who was 2 at the time). I really wanted a sibling for him, but I wondered what it would be like for him to have sibling with Down syndrome.

On June 12, 2007, we welcomed our precious baby boy into the world. As soon as we saw Joel, we fell in love with him and felt so blessed to be his parents.

joel With Mommy

Our love for him has grown deeper since that day. We see the significance of his life every day and feel incredibly blessed to have him in our family. He brings joy and perspective and we are so proud of every one of his accomplishments.

 There have been hard moments since Joel was born but the love and joy that he brings us far outweighs the difficulties. I remember reading about other families that had children with Down syndrome when I was pregnant. They would talk about how much they loved their children and how much joy their children brought to their families. I was pretty sceptical then, but now I know it is true. I love Joel with all of my heart and I thank God for giving me two such amazing boys. God knew all along how amazing Joel would be and I am so grateful that He entrusted Joel to us.

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Contributed by Heidi Peterson.

Tuesday, January 31, 2012

Ellie | A Prenatal Diagnosis: 1 year later

In August 2010, we received the prenatal diagnosis of Down syndrome for Ellie. This is our story, with the perspective a year brings, as well as a few pictures of the little girl who caused us to worry, to cry, and to celebrate.  I've written previously about the weeks and months following the diagnosis, but this is our first post about how we got the news.

We'd been married for about seven months when we learned we were pregnant.  Morning sickness and exhaustion ensued.  Shortly before that magic twelve week mark when morning sickness supposedly goes away, we were at the doctor for a routine checkup, including a sonogram. 

The nuchal fold measured just above the normal range, and my world came crashing down.

Words like, "heart defect," "Trisomy 13," "Trisomy 18," "Down syndrome" were spoken by our  doctor.  "You can get CVS in order to find out for sure.  We've told you as much as we can here."  She was calm and compassionate, but she couldn't change the situation.

I'm healthy.  At the time, I was thirty years old.  I'd run eleven marathons, and had quit training for number twelve because I was pregnant.  Unfair.

We hadn't been married that long.  We have big dreams to travel and have adventures.  Unfair.

I teach Special Education.  I knew the moment "chromosomal" came up what we were talking about.  I couldn't be blissfully ignorant.  Unfair.

My doctor got the genetic testing center on the phone to set up the appointment with the genetic counselor.  I'd have to miss my first day back at work.  I called work.  I spent a week in tears.  Unfair.

Matt and I went on a mini-vacation.  We tried to relax.

The Monday of testing loomed.  I told the genetic counselor I would not terminate, and she dropped the issue.  I saw "Special Ed Teacher" written on my chart.  The genetic counselor was also calm and compassionate.  She couldn't fix the situation, either.

I opted to have the CVS procedure.  I hate needles.  I cried, and Matt held my hand.  Matt brought me home and got me settled.  I spent the rest of that day and the next in bed.  The following day, I went to work.  The genetic counselor had stated that she'd call around four.  I was getting off the freeway when she called, and she waited until I was home to deliver the results.

"Your baby does have Down syndrome."

One sentence.  Confirmation of what I think I already knew in my heart.  Through tears, I asked the gender.  We'd already picked names.  "Cling to each other," the counselor said.

I texted the friends coming to dinner to cancel plans, and called Matt at work.  "Come home."

I went to bed and cried until he got home, and then said the hardest words I've ever said.  I told him that we're having a girl, and that she has Down syndrome.

"Ellie has Down syndrome."

We called parents, and eventually the few friends who knew that we were undergoing testing.  Very few people knew we were pregnant at 11.5 weeks.

And the world kept turning.  We kept going to work.  We cried, we couldn't feel anything, we cried more.  We learned a lot about Down syndrome, and heard encouraging stories.  We were still scared.

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The views on prenatal testing vary widely.  In my mind, the prenatal testing ruined our pregnancy but saved the first few months of Ellie's life for us emotionally.  We had to grow up fast.  We had to talk about things like open heart surgery and lengthy NICU stays.  I worried endlessly about miscarriage.

But when Ellie arrived, we had some brief celebration.  Nothing prepares you for your child being transferred to another hospital, for surgery, for the NICU, but at least we knew.  And the day she came home, the celebration began.  From mid-August of 2010 to late March of 2011, we knew stress and tears.  Her homecoming gave us some peace.

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And now, our angel is settled at home.  We seem a decade older, and Ellie is doing well.  We don't parent any differently than our friends with typical kids, but our decisions about our lives seem to carry more weight.  "Will it be okay for Ellie?  Will we be hurting her development?"  We know that right now, she's on track for her age-appropriate milestones, but her upcoming surgery will set her back.  Life is better now than I could have imagined the day we got that phone call.

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We still dream big, but instead of one big dream, our big dreams are a lot of little things that we never truly appreciated before.

Contributed by Megan at My Stubborn Little Miss

Friday, January 27, 2012

Lucy | A Postnatal Diagnosis

It really all started with a phone call in February 2008, though I wouldn’t know that for another five months. The day after my 20 week ultrasound, the obstetrician’s office called to tell me that they thought they saw an echogenic foci on the baby’s heart. They told me this was a “soft sign” for Down syndrome. They asked me to come back in for a Level II ultrasound.

I remember being so scared. I couldn’t get an appointment for five days for the follow-up ultrasound. They were the longest days I had known to that point. I didn’t want to tell many people about this “complication”, but I was really struggling with pretending nothing was wrong.  We were in the process of buying a house at that time, and had just put a bid in on a house I loved. Mark came into the room and I was crying. He thought it was because they had accepted someone else’s bid. I had never cared less about a house in my life.

My mom went with me to the ultrasound. “Everything looks perfect.” Sigh of tremendous relief. A few more months of blissful ignorance.

I felt my first contractions on Saturday, June 30 … literally just moments after taking care of the final preparations for Lucy’s arrival. We had been in the car after having the car seat inspected. I patted my tummy and had said, “Ok, Peanut, we’re ready for you now.” She listened.

The labor itself was horrendous. I didn’t know it at the time, but I was having back labor. This fooled me into believing that I was farther along than I really was. Sunday night I made Mark take me to the hospital, convinced this baby was coming any second. They sent me home at 1 cm. I felt foolish and vowed not to go back until I was sure she was on her way. The end result was that in a stubborn snit, I waited far too long and my precious daughter was dangerously close to being born on my living room floor.

Mark was at work, so my sister took me to the hospital and stayed in the delivery room for the whole ordeal. I progressed from 5 cm to 9 cm in less than 25 minutes. No epidural. I was sure I was going to die. The consolation was that she came fast. I barely pushed. Mark barely made it in time. From the moment of checking into the hospital until the moment she was born … 56 minutes.

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They took her to the nursery immediately for observation. I was so disoriented that this did not alarm me. They said it was nothing to worry about, but they wanted to monitor her breathing. They came back quickly and said she was breathing fine, but her temperature was low so they were going to put her in the warmer for a bit. They took me to my room, but we stopped by the nursery so I could hold her for a few minutes. She was gorgeous. She looked like Mark’s Mom, brother and aunt. I was smitten.

It wasn’t terribly long until they brought her in to the room. Maybe an hour? I was eating and don’t really remember. Life was still too surreal to be keeping track of time. We held her. We took pictures. Sometimes when looking back I feel like something was off, something that I couldn’t put my finger on. But sometimes I also think it’s just hindsight.

A few hours after Lucy was born, maybe about four or so, I was in my room with Mark and his parents. The pediatrician came in to examine her. She was listening to her heart. For a long time. A really long time. My father-in-law, not one to beat around the bush, questioned the doctor on the intensity of her exam. This pediatrician, whom I had never met before, looked at him and said, “Well you know the baby has Down syndrome, right?”

I remember it slightly different. I thought she said, “We think the baby has Down syndrome”, but Mark and his parents agree on the original version so that’s what we’ll go with.

Mark responded with “Excuse me?”, to which Dr. Bedside Manner replied with, “Are you the baby’s father?”.

I am sure there is a lawsuit in there somewhere, but when it was relevant, I didn’t have any fight left in me. Needless to say, this woman is NOT my pediatrician.

“Well, you know the baby has Down syndrome, right?”

No. I didn’t.

I had always heard the expression “all the air left the room”. I had never felt it until that moment. It left the room. It left my lungs. It was as if someone had physically punched me in the gut. I was shocked. But given our scare way back in February, I wasn’t necessarily surprised. I wonder sometimes if that made it easier. That little non-warning.

The doctor then preceded to show us all the physical characteristics that led them to the conclusion that Lucy had Down syndrome. After she left, we preceded to explain them all away. Her almond shaped eyes, well, Mark’s family has almond shaped eyes. The small, low set ears, well, I have really tiny ears and I have always felt they were a little low. The slight curvature of her pinky, well, I have a good friend whose pinkies are slightly curved and she most certainly doesn’t have Down syndrome. We’ll wait for the karyotype to come in, but we’re pretty sure they’re mistaken.

But, later that night, when everyone else was gone and it was just me and Lucy, I unswaddled her. I looked at her feet. I could not explain away that gap between her toes. And in my heart I knew, though I wouldn’t admit that I knew until the next day when her new cardiologist told me that she had a heart defect and would require open heart surgery within the first year of life. When he walked out, Mark and I both admitted we didn’t need to wait for the karyotype any longer.

When she was two days old, we took her home. Knowing what I know now, about how many babies with Down syndrome spend time in the NICU, I feel tremendously blessed. We took her home, relatively healthy, and began the long process of rebuilding our reality.

Contributed by Courtney at Mutterings and Musings