Eyes

In those first painful 36 hours after Bryce was born and diagnosed with Downs, his eyes brought me a lot of pain. It is usually such a rare treat when your newborn has his eyes open, but with Bryce it was different.  If his eyes were closed, and I didn't look too carefully at his neck fold or short arms, I could try and forget the painful truth. But his eyes were a dead giveaway....he had Down syndrome.

Now that the pain has lessened, his eyes are one of my favorite things about him. Now, his two or three hours of wakefulness is my favorite part of the day. The irises of his eyes are so big, they almost look like puppy dog eyes--very little white around the edges. They are never still--he is always looking around, curious about this new world. There is something about those tell-tale, slanted eyes that just look happy. When I look at his eyes, he seems older than 4 weeks. They look like he could break out into a smile at any minute.

I know that those eyes will continue to be a dead giveaway. When people see him, they will know. I worry about that. I don't want people judging him, staring at him, teasing him. But, when I look at them, I see that they are bright and beautiful. I see that they aren't so different from the rest of the family--Mike and I both have almond shaped eyes too. They are beautiful--just look at them!

 

 I already wonder what is going on behind them, and hope with all my heart that he will have the ability to tell me someday.

The Bitter Part of Bittersweet

    July 31st was a bittersweet day. Honestly, it was about 5% sweet and 95% bitter. It was the day our son, Bryce, was born. I feel so horrible already for saying that. This post will be full of things I feel guilty about, but I'm a painfully honest person. I know there are people who read this blog who don't know me. If you are here to judge or criticize, please don't continue reading. As of a month ago, I probably would have been appalled to read some of the things I will write...but I hadn't walked in these shoes yet.

     As explained in my early post, Bryce's labor and delivery was a whirlwind. I was so ready to not be pregnant anymore. When he was born and they placed him on my chest, it was one of my happiest moments. The day your child is born is supposed to be that way. He was so nice and big for being a preemie, and he had that beautiful head full of dark hair. He was crying and healthy enough for them to let us hold him for a while and take some pictures before whisking him away to the nursery. During that time, I couldn't see him very well, because he was right under my chin. Everyone said he was beautiful, but I just remember noticing his dark hair and how little his hands were. I didn't think he looked anything like his brother. I just found out recently that Mike suspected something was wrong right away, and I feel bad that he never had those few moments of ignorant bliss that I had.

     After a few minutes, they took him to the nursery and Mike was able to go along. I started looking through the pictures we had just taken on my camera. In a couple of the pictures, I noticed that it kind of looked like he had Down syndrome, but I shrugged it off, thinking that all newborns are kind of funny looking. It didn't seem to me like anyone had been concerned, and I had been monitored so closely....

     When Mike came back into the room a little while later, he asked me if I thought it looked like he had Downs. I again dismissed it, but could tell Mike (who had seen him a lot more than me) was worried.  Shortly thereafter, the NNP came in and told us that our son was healthy and beautiful (part of that sweet 5%)....and that she suspected he had Down syndrome (start the bitter 95%). My world stopped spinning. The whole high of  bringing a child into this world came crashing down. I couldn't tell you what was said after that, but in my memory, it seemed like she dropped a bomb and then went running from the room to save herself, leaving Mike and I to "grieve" the child we thought we were going to have.

     I also instantly and selfishly grieved the life I thought we would have. We had a "handicapped" child. He would live with us forever. There goes any dreams of having an empty nest and enjoying retirement. People will stare at us in public. Connor won't get to have a "normal" brother. Even though I now feel guilty for thinking these things instead of instantly loving my child unconditionally, they are legitimate fears and ones that may or may not actually happen. Our lives went from path A to path B without our knowledge or permission. How could we NOT grieve?

     Much of the rest of that day is a blur. I know I cried a lot, but I also know I pretended everything was okay a lot too. When I went to hold my son in the nursery, I didn't recognize him as my son. All I saw was the face of someone with Down syndrome. I am so ashamed to say it, but it wasn't really love at first sight like it's supposed to be. He scared me. He didn't look like Connor. He didn't look like me or like Mike. He looked like a kid with Down syndrome. But, I continued to go into the nursery, hug him, kiss him, show him off to his grandparents, and pretended to be so happy and proud.

He LOVES his baths!

    Luckily, the reason I can admit to those feelings now, is because they are no longer the case. I AM completely in love with him. I rarely even see the Down syndrome in him anymore. He DOES look like Mike. He has the same mouth and chin as Connor. He IS my son, and I AM proud of him. A lot of it was shock, a lot of it was fear of the unknown. In the two weeks since Bryce was born, I have come to accept the feelings  I had (and sometimes still have) as normal. I have read blogs and stories of other parents of children with Down syndrome and they very much echo my own story. The feelings of grief are healthy and normal. I wasn't grieving the life of my child, I was grieving the expectations I had for my child.

How could I NOT  be in love??

     Even though three weeks ago I was completely unaware of what my life was about to become, I already can't imagine it being any different. I can't imagine what life would be right now had Bryce been born without that extra 21st chromosome. Do I wish he would have been? Yes, of course I do. But that's who he is, and I love him--he is my son, the one I was meant to have.

    In the days since the grief and shock have lessened (not disappeared...), I have even become excited to raise Bryce and see what he can do. I have been able to see some positives in the situation. There is a large community of people we will meet. Not a club we wanted to join, but one we are a part of nonetheless. I believe Connor will be a better person--more loving, patient, and accepting of others. I know that he will be such a good brother. I remember in the horrible, dark moments after we found out, I kept thinking about how Connor will just see him as his brother--he won't know there is anything wrong with him. Eventually, yes, we will have to explain it to him somehow, but I was envious of the fact that Connor would just look at him and see the baby brother we'd been talking about, not the face of Down syndrome that I saw.


    I am so lucky to have a partner like I have. Things like this have to be exceptionally hard for men, but my man stepped up to the plate and accepted Bryce even before I did. He is so full of love, and me and these boys are blessed beyond belief to have him. The road ahead of us is bumpy, long, and will take many unexpected twists and turns. We don't know how 'severe' Bryce's Downs will be. We don't know what he will be capable of...but do we know that for any of our children when they are two weeks old? What we do know is that he appears to be healthy right NOW. We do know that we will do everything in our power for him to exceed expectations. We do know that he is a sweet, snuggly, adorable baby who needs us. When he gets home, our lives will be filled with appointments, assessments, meetings with OTs, PTs, speech therapists, doctors, etc. But it will also be filled with love.

So Blessed!

   

Bryce's Birth Story

         Whew, it's been quite a week. Our little sweetheart is one week old today. Our life is pretty nuts right now. We are, unfortunately, experienced in the Level II nursery...Bryce is camped out in the same spot that Connor was 2 1/2 years ago. My life is broken down into 3 hour segments.....feed Bryce, pump, wash the pump, deliver the milk, pass time for an hour, repeat. In the middle of all that, I am also trying to be a wife and a mother to Connor as well. It is not easy. I'm exhausted. I want Bryce out of here so we can be a family. I don't want to choose between my boys any more...but I have a feeling we'll be doing it for a while longer.

          As many of you readers know, we received a shock when, about 30 minutes after delivery, we received the news that our baby most likely had Down Syndrome. We had no clue. I will save this part of the story for another post. That post is going to take some time, thought, and tears. I think I can share his birth story, though.

        On Monday, July 30th, I had a doctor's appointment. I was about two and a half centimeters dilated, and was feeling a little nauseous. Even though I wasn't having many contractions that morning, I kinda had a feeling it was coming soon. My goal had always been to make it at least until August 1st, when I'd be 34 weeks. That evening, my contractions started getting more frequent and painful. I'd been to the hospital quite a few times with false alarms, so I didn't go in that night. My contractions were strong, but still not regular (they didn't get regular with Connor until late in the labor process either). I took one of the pills I was on for contractions and went to bed. I actually slept about 4 hours, but then I woke up at 3:30 in a lot of pain. Finally at 5:00 am, I decided to go in. I still wasn't convinced it was real (for some reason), so Mike did not go with me. We didn't want to wake/do anything with Connor until we knew if it was real. By the time I got checked in at the hospital, I was in excruciating pain. If this wasn't real labor, there was something majorly wrong with me :)

        They finally checked my cervix at about 5:45 and the nurse went to get a second opinion. She probably couldn't believe I was already dilated 5 cm....but I was. I called Mike to arrange something for Connor, and they moved me to a delivery room. Time is a little fuzzy, but as I waited for Mike to get there, I labored hard. There is a wonderful nurse named Amy (who had been one of the people with me during one of my false alarms) who just came in to sit with me, since I was an orphan mom with no husband there :) My mom also arrived to be with me. By probably 7:30 I was up to 9 cm and really feeling like I had to push. They gave me a dose of medicine to slow my labor until Mike and the anesthesiologist could get there. They also gave me a dose of narcotics that took the edge off. I was literally holding the baby in at that point. The anesthesiologist gave me an intrathecal (a shot that goes into the spinal fluid that somewhat numbs/eases the pain for about 2 hours), and then we had to wait for my doctor to get out of a c-section. Mike had also arrived by this point. It was seriously crazy...I could have delivered probably 45-60 minutes before I did. They just made me comfortable and then I had to wait. Finally, about 8:20 or so I was feeling the need to push again. My doctor finally arrived, broke my water, and 3 contractions later, Bryce James was born at 8:40 am. I wanted him out so badly, I pushed like a mad woman :) It was such a whirlwind. 4 hours earlier I didn't even know if I should go to the hospital!

         When you  have a preemie, you don't know if you'll be able to hold them right away or not. With Connor, the doctor literally cut the cord and instantly handed him off to the NNP (neonatal nurse practitioner). My doctor delivered Bryce and told me she would put him on my tummy right away like everyone else gets to do. Mike was even able to cut the cord (which I didn't discover until later). The NNP checked him out and then let us hold him for probably 5-10 minutes, which was really nice. They then took him to the nursery, and Mike was able to follow him down there. It was shortly after this that we saw some things that made us think of Downs, and the NNP came in to tell us she was suspicious as well--again, there will be a blog about this sometime soon.

         We were so happy to have our boy here, and I was happy to not be pregnant anymore! He is so chubby for a preemie--6 lb. 3oz. and has a head full of dark hair. Our first child was 4 lbs, long and skinny with fair hair, so he just looked so different! It would take me a day or two to even recognize Bryce as my child, but now I even see some resemblances between him and Connor. I am LOVING him to pieces, and really want him out of the hospital. His only goal is having the stamina to eat on his own. He does know HOW to nurse, but drifts off to sleep after about 5 minutes. I have been hesitant to try a bottle because I am afraid I'll give up on nursing just to get him out of here, but I will probably try soon. At the rate we're going, we'll be here awhile if I only nurse. It is just too hard splitting my time and "choosing" between my boys. I also just feel weird at home because our family is not complete without Bryce there. A nurse pretty much confirmed he'd get out of here sooner if he takes a bottle, so we'll see. I will still pump and give him breast milk as long as I can, but this will be difficult with Connor at home. It is a painful and time consuming feat. As long as I stay determined to keep trying to get him to nurse, we may be able to get out of here on a bottle and he can nurse more when he gets stronger. We'll see!

         So, there is the story of how our little man came into the world. It was hard to imagine loving another one as much as Connor, but he of course has completely stolen our hearts.

          Take care!  Julie