September 17, 2011

Our New Story

The very first thing I thought when this doctor showed up in our postpartum room, out of breath and wanting to talk to us about Samuel, was "This is bad."
My second thought, just a split second later, was "Is he dead? Is he dead? IS HE DEAD???" It was screaming through my brain while I tried to quiet it enough to listen to the actual words coming out of her mouth. The morphine haze that I had been in since they put me in recovery suddenly evaporated.

Travis and I listened as she explained how Samuel had had some complications once he was taken to the nursery. He had started to turn blue and they rushed him down to the NICU. They weren't sure what was happening, but they were doing tests and they would keep us updated. They suspected his heart wasn't functioning correctly and they explained to us that he was also exhibiting some soft signs of Down Syndrome. He was stable, but they were keeping him in the NICU until they could figure out what was going on.

He wasn't dead...but something wasn't right.

This is how our family got a new story to tell. This is the beginning. Before this moment, we were not the parents of, the brother of, the grandparent of, the aunt/uncle/niece/nephew of a special needs baby. But after that day, after that moment, we suddenly became just that.

We had not chosen to do extra genetic testing while I was pregnant, so when my routine ultrasounds came back with normal results, we assumed everything was good and we never looked back. We had just spent an entire hour with our baby while I was in the Recovery room. Holding him, examining fingers and toes, staring at his precious little face. We noticed how his ears were folded over a little at the top, but that didn't mean anything to us. He'd been seen by at least a dozen people already and no one told us anything. I don't know if they didn't know he Downs or if they just weren't telling us yet.

After the out of breath doctor (I am sure she told us her name, but that is not a detail that stuck. What stuck was that this woman had just run to our room. It's not good when they run) left, Travis and I tried to absorb what was happening. Because of the c-section, I had to remain in bed until 10:30 that night. Travis would have to brave the NICU by himself. As much as I hated being in that room by myself, I hated the idea of Samuel being without one of us even more. As soon as they finished the testing, they allowed Travis to go visit. He was stable, breathing on his own, but until they knew what was happening, they were keeping him in there. He had to have IV antibiotics because of the c-section and my status as a Strep B carrier, but he wasn't on any other medications or treatments at that point.

Since Samuel was born at 10 in the morning, we had a whole day ahead of us of doctors and specialists. Some met with Travis in the NICU, while others came up to my room to give us news, updates, and opinions. It was an overwhelming time. The not knowing was the worst. Stuck in that bed, drugged up on pain pills, still reeling from an emergency c-section...I couldn't get my brain to stop going in circles.
Did he have Down Syndrome? What was wrong with his heart? Could they fix his heart? What is Down Syndrome exactly? Is this my fault? Did I not take enough vitamins? Is it because I got so sick that week in December? What if they can't fix his heart? On and on and on.

One of my best friends in the world lost her firstborn due to a heart defect and I could not stop thinking about her. I had spent a few days with her family in the children's hospital while they tried to repair his heart, and I kept remembering his tiny body surrounded by all those machines and the raw grief I saw etched on my friend's face. I could not believe this was happening. When you know someone who has to deal with those 1%-chance kind of things like undetected heart defects or SIDS or brain tumors, you figure the odds of something like that happening to you are even less. At least that's the way I figure it. But apparently, that is flawed logic. Or I just have the enormous privilege of being in an elite group. The .001 percenters.

1 in 800 babies are born with Down Syndrome.  It is the most common birth defect in the US. 50% of babies with DS have some sort of heart defect. Due to my fairly young age (29), I had about a 1 in 1000 chance of having a baby with DS. (It is estimated that 90% of women who are prenatally diagnosed with DS will choose to terminate the pregnancy...of all these stats, this is the one that most blows my mind.)

By the end of the day, we knew that Samuel had AVSD. (15-20% of babies with DS are diagnosed with AVSD.)  At that point, I wasn't very clear about what that meant exactly, despite the handout and diagrams the cardiologist had given us. We've since had a crash course in Pediatric Cardiology. Of all the things that could be wrong with his heart, this diagnosis wasn't so bad. They knew how to fix it and have a high success rate. At his one month follow-up with the cardiologist, we also learned that Samuel has PDA. We weren't aware of this before the appointment, but it will be fixed during the same surgery that will fix the AVSD.

As for the DS, the geneticist had stopped by the NICU to examine Sam and take a sample. It would be another 48 hours before they confirmed for us that Samuel does have Trisomy 21, which is the most common type of Down Syndrome. We learned that it is a genetic disorder and nothing I did or didn't do during my pregnancy had any effect on it.

We were lucky that Samuel was otherwise very healthy. He had a bout with jaundice, but after a day under the lights, it cleared up enough and he was able to leave the NICU after 3 days. Another 2 days in the regular nursery and we were both discharged. We've had at least two appointments every week since leaving the hospital, so it has taken over our lives in a very tangible way. We are learning the ins and outs (mostly outs in our case) of Social Security and Medicaid, and getting connected with Child Development Services for our county. We've seen the cardiologist and surgeon along with the normal newborn appointments with the pediatrician. We had a speech therapy evaluation this week to see about getting help with the breastfeeding.

Samuel is now seven weeks old, and in some ways, things are exactly as we expected them to be before we knew anything about his problems. He's a much easier baby than Luke ever was. He sleeps better, he gains weight better (even though he isn't able to breastfeed yet), he tolerates tummy time better. He will actually let you put him down to sleep. Travis and I are dealing with the joys of interrupted sleep and night feedings.
But in other ways, things are not going as expected. He's not showing the expected signs of heart failure. He is gaining weight easily. He doesn't have a heart murmur. Basically, he looks like a completely healthy newborn...and that's not good news. For various reasons I only pretend to understand, we will be doing the heart surgery very soon instead of waiting 4-6 months. They wanted him to be bigger and older before they operated, but because his heart isn't doing what it's supposed to be doing, he faces the threat of permanent damage to his lungs. So, they are doing it now. They finalized the decision on Thursday and now we are left waiting for a slot in the surgeon's schedule. It's not an emergency situation yet, but I would say it is high priority.

We have learned so much about Down Syndrome and have been embraced by so many families in that tight knit community in the last 2 months and I am sure we will be sharing that journey here and through Travis' column. But for now, we are focused on his heart and this upcoming operation.

Thanks for sticking with me through this lengthy post. And now here is a cute picture of my kid as your reward.

September 8, 2011

Samuel's Birth Story

Being pregnant for the second time was almost nothing like what I expecting it to be. The morning sickness was worse. The round ligament pain was unbelievable and unfair. I had incredibly painful Braxton Hicks. I was exhausted the full 9 months, courtesy of my very active toddler. But on the other hand...I didn't crave a hamburger once, I was way more mellow and only consulted the Pregnancy Bible twice, and second trimester bliss was still bliss.

Of course, my natural inclination was to compare the two pregnancies. For the most part, my second pregnancy was more complicated and yet, still mostly normal. My blood work was a little off during my first trimester, but everything corrected itself by the follow-up visit. They couldn't get all the right measurements at the first ultrasound, but again, everything was good on the follow-up ultrasound. So, we went into the final stretch with just anxious excitement, our only concern the increased possibility that I would have another hemorrhage.

In fact, I was so concerned about having another postpartum hemorrhage that I spent 9 months focused on that and completely avoided thinking about what labor and delivery would be like the second time around. With my first pregnancy, my water broke when I was 37.5 weeks along and I had to be induced. I never experienced any pain with my Braxton Hicks, so the only experience I had with real contractions was the two hours between when they broke my second bag of waters in the hospital and when they finally got the epidural to work. The whole thing, from water breaking to actually birthing a baby, took less than 18 hours.

So, imagine my surprise when I started having contractions MONTHS in advance of my due date. I learned that Braxton Hicks do, in fact, hurt. A LOT. I had them in the middle of the night, I had them in the pool while I was trying to teach, I had them while trying to keep up with a very active toddler. I had them so often that I was doubtful that I would even know when they switched from being "practice" contractions to the real deal.

I actually went into labor at 35 weeks because I got a stomach bug and got dehydrated. Since Luke had come at 37 weeks, I was positive that this baby would come just as early, but I wasn't quite ready at 35 weeks. We were greatly relieved to get the labor stopped, but the dry run had me antsy for the real thing. So, as weeks 36-38 went by, I became more and more convinced that I would be pregnant forever. Every woman who has ever been pregnant understands this feeling.

Everyone tells you that your second labor will go much quicker. Actually, because so many people feel the need to hammer this "fact" into your head, I was paranoid that I would deliver my baby in the driveway. However, my early labor began a full 24 hours before we went to the hospital. I woke up around 5 AM Wednesday morning with contractions. They were painful, but not consistent. By that evening, I was completely exasperated. The contractions weren't stopping, like they had every other time, but they were so erratic, I didn't know what to think. I was determined that this was going to be it, so I packed everyone up and off we went to walk the mall, since it was too hot to walk outside. Even then, it was after midnight before they started strengthening and becoming more consistent. I spent 3 hours timing them, and thankfully, around 2 AM, they went from every 10-14 minutes to every 5. I got Travis up, called a neighbor to watch Luke, and off we went.

When we got to the hospital, the contractions had become erratic again, although they continued to get stronger and more painful. We spent an hour or two walking the halls, where they evened out to about every 4 minutes. Even though they slowed down again once I was hooked back up to the monitors and in bed, they were making progress and we got the green light to stay. Because the contractions weren't progressing in a textbook manner, I was confused about what was happening. My plan was to stay up right and walking for as long as I could take it and then ask for the epidural. I hated the idea of laboring while laying down.

However, once they got me hooked back up to the fetal monitor, they began to start worrying about the baby's heart rate. It would dip during contractions, but then rebound immediately. They weren't too alarmed at first, but eventually, they started to monitor it more closely. I went ahead and got the epidural since I'd been having hard contractions for over 12 hours, and they were going to make me stay attached to the monitors and in bed.

Shortly after the epidural took effect, the baby's heart rate wasn't bounding back as fast and more people started showing up in the room. They began moving me around and trying different positions. Left side, right side, on all fours, on oxygen, off oxygen. I eventually ended up on my hands and knees, oxygen mask on my face, face smashed into a pillow, but to no avail. They were still concerned about the dips in his heart rate and how his rate was staying low, in general. While I was still in that very dignified and uncomfortable position, I heard the nurse ask the obstetrician if she was calling it. She said yes, and before I knew it, a nurse was throwing a blanket over my back and my bed was moving. I didn't even get to see Travis before I was being wheeled into the hallway and the anesthesiologist was running alongside trying to inject something into my IV.

From this point on, I kept my eyes closed. I was silently freaking out. Once they got me into the OR and on my back, I kept them closed because I knew if I opened them and saw where I was and how all those people were whizzing around me, I wasn't going to be able to hold it together. My anxiety was already high because of the hemorrhage possibility, and you know, because I was giving birth...but this was more than my brain could process. So I just closed my eyes, tried not to cry too much, and listened to the amazing anesthesiologist who was my savior and kept me from losing it. Seriously, she was amazing and if you had the ability to request a doctor for your emergency C-section, I would totally recommend her.

In what seemed like hours, but was probably only 5 minutes, Travis appeared by my head dressed in scrubs and they started they operation. Within minutes, he was out. The cry of our newborn son is something I will never forget. His name is Samuel. Samuel Dean Norton. He was 6 lbs, 10oz, and 19 inches long. He was born at 10:21 AM.

For now, I'm going to leave it at that. I will go into all that happened after the C-section, but for tonight, I want to remember that one perfect moment when he was born and we were both fine. Before the NICU and the geneticist and the cardiologists, before our lives were forever changed. That moment when I heard him cry, when I held my husband's hand and cried tears of relief and happiness. That was a good moment.

September 3, 2011

Dear Luke (Year 2)

Dear Luke,

Today you turned 2 years old. As 5:21 rolled around this afternoon, I was remembering those crazy last moments before you made your entrance into our lives. I know everyone always says this, but I truly cannot believe you have been with us for two years. It's gone so fast. And yet...I can barely remember what life was like before you came along.

In the past year, you have changed in almost every way possible. Physically, you've weighed the same amount for 6+ months, but you've been gaining half an inch in height every month. You are losing all your hard-earned baby fat and turning into a little boy right before our eyes. You've gotten so tall.

You are a climber. From the bookcases in your room to the rocks in the backyard, you are not afraid to explore. It amazes me how well you've learned to use your body. I can remember those days when we waited with bated breath to see if you'd figure out how to flip your little body over. Now, I watch in amazement as you haul yourself onto furniture, up ladders, through jungle gyms, and onto all sorts of places you are not supposed to be (ie. on top of the piano, the middle of the table, on the kitchen counters, on top of your dresser, etc etc ETC).

You have finally become a good sleeper; mostly because if you are awake, you are moving. You play hard and you sleep hard. You hardly ever sit still, usually only lulled into submission by Sesame Street or Veggie Tales.

When you were a baby, we wondered about your personality. You've always been a happy guy, but would you be smart? Would you have a temper? Would you be an introvert like your parents, or more extroverted? The past year has started to answer some of those questions for us. In the past 2 months, you have figured out EVERY single "child-proof" device in our house.(As an aside...I think you should get a refund if your kid can undo them. False Advertising.) Last week, as we watched you drag a bag of blocks over to the front door, then proceed to climb on top so that you would be tall enough to unlock the dead bolt (our only defense since you dismantled the door knob cover in 2 hours), your father said, "Well, he's not dumb." Amen. Our garage has become a holding pen for all the toys you use as step ladders.

While you have hit all the physical milestones months ahead of when those charts said you would, you have been slow to talk. At your 18 month doctor's appointment, I may have fudged just a little bit on how many words you could say. You were supposed to have 10 by then, but you barely said 3. At two years of age, you are finally working on your HI!! and BYE CYA! and you are picking up new words every day. CAH! (Car) HAH!HAH! (Hot! Hot!)

While you may not be spouting Shakespeare, you are very adept at getting your point across. You have inherited my overly expressive face and can make a statement just by lifting your eyebrows. And if all else fails, you are not afraid to grab a hand and literally drag someone across the room and point at the cookie jar or place their hand on the doorknob. Subtlety will not be your gift, I feel.

To celebrate your birthday, we took you to Monkey Joe's last weekend, and watched you run non-stop for 2 hours. While you were hesitant at first about walking on the weird surface of the bounce house, you got over it and had a great time. An older boy continually knocked you down on one of the slides, and while most toddlers would have dissolved into tears, you laughed and pushed him back.

As I've already said, you are a physical kid and have yet to figure out when it is ok to play rough and when it's frowned upon. It must be so hard to be a toddler and have to figure out all these social cues. It's ok to throw the soft soccer ball at your dad, but it's not ok to throw your full sippy cup at the dog. It's ok to draw on the sidewalk and the chalkboard, but not ok to draw on any of the walls, furniture, or books. It's ok to play rough on the jungle gym when everyone is laughing, but it's not ok to poke at the girls on vacation when they want to play princess and not Wrestlemania.
Your father and I are doing our best to explain it to you in a way that you'll understand, but we all end up needing a time out at one point or another as we deal with these frustrating things.

This past month, you became a big brother. Up until the day Mom and Dad disappeared and Grandma magically appeared while you were sleeping, you had no clue anything was going on. You showed no interest in my burgeoning belly, nor did it bother you when we moved your crib into another room and got you a Big Boy Bed. Needless to say, Samuel has rocked your world.
The first few weeks were tough, as you were figuring out how to be gentle with him. So far, we've had a few close calls, but you have yet to maim him in any way. I'm so proud of you for adjusting the way you have, and it melts my heart every time you insist on giving Samuel his nightly blessing before you will do anyone else.
Your little brother was born with Down Syndrome and a heart defect. The heart defect we can fix, but your brother is always going to be different from you in a myriad of other ways. I don't know what this is going to mean for your life. For any of our lives. It is something we, as a family, are still trying to figure out. I imagine we will always be figuring it out. I hope you love him, protect him, watch out for him, and guide him as only a big brother can. I think he is going to be a lucky boy to have you as his brother.
My sweet, crazy boy...I love you. I'm so glad I get to be your Mom.