The Small Family     

Hi all! Most of you probably know the reason for the late blog this week, but for those of you who don’t, you can blame it on one Samuel Ames Small making a surprise appearance! That’s right--Garbanzo has arrived, and with quite a story to tell.

It all started on Friday. I went to Kaiser for a non-stress test and an amniotic fluid check. As you may have read in last week’s blog, we found out that Garbanzo was (a) breech and (b) low on amniotic fluid. So, to be safe, the doctor had me come in Friday for the aforementioned tests. They went smoothly--for the most part. On Friday they found more amniotic fluid than previously measured, so that was a good thing. And the baby responded well during the non-stress test--his heart was good and strong through 30 minutes of monitoring, during which time I had three contractions. I had to laugh about this, as I have been contracting for weeks, and I could feel them strongly probably about 30 times a day. But I didn’t feel any contractions during the NST. Apparently I was having them and just didn’t know it. So if I was feeling 30+ contractions a day and having even more that I didn’t feel, imagine how many total I must’ve been having!

Anyway, they sent me home with a full schedule of appointments for the following week. They found the baby to be measuring small for his gestation (especially given how large Theo was at birth--8 lbs 3 oz even at only 38.5 weeks gestation), so they wanted to follow up and monitor Garbanzo. I went through a scheduling nightmare trying to get all those tests set up during Theo’s preschool times, but finally got it all set.

And so, it being Friday night, we decided to go out for dinner as a “date night.” Nothing fancy--just some pizza and minestrone for the three of us. We had a tasty dinner and then went home. Chris and I tried to watch a little TV after Theo went to bed, but I was exhausted and not feeling terrific, so I headed to bed, read for a bit, and then called it a night.

After half an hour of sleep, I woke to go to the bathroom. (Nothing unusual about that--I had been a pee machine for weeks!) I did my business, crawled back into bed, and felt an ominous trickle--very similar to the one I felt when my water broke with Theo. Uh oh…. I got up and went to the bathroom, and whoosh!! Giant wave of amniotic fluid erupted. I started laughing and headed into the den, where Chris was sleeping. (Our sleep has been so crazy lately between Chris’s early wakeup for work and my insomnia that we often end up in separate rooms for the night.) I pushed open the den door and announced, “My water just broke.” To which Chris replied with a bit of a chuckle and a bit of exasperation, “Can’t you ever go into labor anytime other than midnight?” Nope, apparently not! It was déjà vu of when I went into labor with Theo!

I headed back into the bathroom to clean myself up while Chris called his dad (to watch Theo for us) and packed a bag. So far so good. We thought about whether we should wait for Chris’s dad at our house and then go to the hospital or whether we should just wake Theo, drag him along to the hospital, and head out. We ultimately decided to do the latter, as I was Group B Strep positive and thus was ideally supposed to get on IV antibiotics within an hour of my water breaking (to avoid passing an infection on to the baby). As it turns out, it’s a good thing we decided to do that, because it wasn’t so long after that when things started to go very awry.

We got to Kaiser and got checked in, and I was relieved to be there, as I was having regular contractions that were getting progressively more painful. Chris’s dad arrived and picked up Theo, so at least that was under control. And Chris and I settled into a labor room to get ready to meet our second son.

As I mentioned in last week’s blog, we knew I had to have a C-section because the baby was breech. And they confirmed at that point that he was still breech, so that hadn’t changed. The staff wondered whether I could wait until 6am for a C-section or whether they ought to do it in the middle of the night. They prefer to do them first thing in the morning, as everyone is more awake, but they will do them in the middle of the night if need be. I jokingly said, “Don’t tell me you’re sleepy in the middle of the night--no one having surgery wants to hear that!” After a bit of discussion and assessing the strength of my contractions, they decided not to make me wait until 6am. I had to wait until eight hours after my last bit of food to maximize my own safety during the procedure (not necessarily a good idea to have food in your stomach when you’ve having abdominal surgery!), but that put us at about 3:30am. Excellent--worked for me. I could last through a couple more hours of contractions.

But it turns out that our baby had other ideas. At about 2:30, I got up to go to the bathroom and was hit by a monster contraction. And I mean monster. My contractions to that point had been getting stronger, but they were only lasting maybe 60 seconds or so. I could easily breathe through them without any sort of pain medication--yes they hurt, but they were bearable. But this one was different. It hurt a whole lot worse, and it wouldn’t stop. For several minutes I was shifting positions and starting to writhe a bit in pain. It just really hurt and wouldn’t let up. I started to apologize for being wimpy about it, and suddenly alarms started going off and the sounds from the baby’s heart monitor slowed way down. I looked over and saw that our baby’s beautiful heartbeat of 140 beats per minute had plummeted to 34! Now, some deceleration of the baby’s heart rate is normal during a contraction, but nowhere near that extent. His heart rate was dropping dangerously, thus all the alarms going off. Suddenly, the room was full of people yelling directions at me: “Turn over on your other side!” “Lift up your leg!” “We need to see what’s going on!” “Turn again!” All the while, the damned alarms were going, and Chris and I were asking what was happening.

In short order, the people in the room slapped an oxygen mask on me, started running down the hall with my gurney, and I heard “Code C in Labor and Delivery!” being broadcast over the hospital PA. Chris was nowhere to be seen--they had told him he couldn’t come because it was an emergency. I kept asking, “Is the baby okay? Is he okay?” All I wanted was for someone to tell me, “He’ll be fine,” but no one did. Someone finally said, “We don’t know. That’s what we need to find out.” As they ran down the hall (and I felt like someone in an episode of ER, lying there helpless on the gurney), they informed me that I’d have to be completely put out (general anesthesia) because they needed to go in right away, and there was no time for a traditional C-section with a regular spinal block. By this point I was shaking like a leaf, crying, and begging them to just get the baby out safely.

I have never been so frightened in my life. Here I was, full-term pregnant with the baby we weren’t even sure we’d be able to have--the baby we wanted so badly to complete our family--and now I might have gotten to the very end, only to lose him. I couldn’t stop shaking, and although neither Chris nor I practice organized religion, I sent up a prayer asking for help. (Chris later told me he was out in the hallway where they’d told him to stay, doing the same thing. At that point, he knew the baby was in danger but didn’t know whether I was or not--the poor guy was wondering whether either one of us was going to be okay!)

In the OR, they quickly moved me onto an operating table…and then I heard a beautiful sound. A steadily increasing tempo of beats. The baby’s heartbeat was coming back up! It came back up into a normal range, and suddenly we could all breathe again. The doctor said that what probably happened was that during the long, hideous, sustained contraction, the baby’s umbilical cord somehow got compressed--either by the uterus contracting or by the baby sitting on it or something. And having me change positions did nothing to allow the cord to uncompress, which is why the baby’s heart rate wouldn’t come back up. Somehow, though, when they moved me onto the operating table, the cord got uncompressed. A little miracle, in my mind…

So at that point, they still needed to get the baby out then, but we had the luxury of a little more time. They did a spinal block on me (the usual anesthesia for a C-section) so that I’d be awake for the surgery, and they brought Chris in to be there. I won’t say things were easy at that point--I shook like crazy for about two straight hours after that scare, and being strapped down to a table, knowing my insides were being cut open, didn’t help my anxiety. But at least I had Chris by my side and could hear the beautiful sound of a once-again steady heartbeat.

The surgery itself was pretty uneventful. I spent most of the time trying to take deep breaths to get the shaking to stop, though I was unsuccessful. I’m told anesthesia can cause the shakes, but I suspect the large jolt of adrenalin from the near-disaster with the baby didn’t help matters.

At 3:15 a.m. we heard a beautiful, strong cry, and the doctor said, “There you are, little man! You’ve got a bald one!” I snickered, picturing a beautiful baldy like Theo. We make bald babies here in the Small household! And then I started to weep out of relief--our baby was okay! Crisis averted, and he was fine. It just about killed me to not be able to see him right away, though--he was across the room being checked out by a doctor (or someone??) while my surgery was continuing. I had requested to have my tubes tied while they were doing the surgery, as Chris and I are certain that our family is complete at four. Financially, it’s all we can afford, and we are very content with our family being us and our two boys. So, they had several minutes of work left to do before they could close me up, and I had to just look at our new baby boy from afar. I could see the top of his bald head and hear his cry, and I told Chris, “He must be healthy--that’s a loud cry! Louder than Theo was when he was born!” I heard the woman checking him out say he scored a 9 on the APGAR test, and I was delighted. Chris and I both had tears of joy running down our cheeks. It was a beautiful moment--so much more joyful than when I had Theo. (For those who don’t know, Theo was a very long, very difficult delivery. We were of course happy when he was finally born, but we were both so exhausted after 36 grueling hours that his birth wasn’t necessarily the “pure joy” moment you see in the movies. It was more the “thank god that’s over!” variety!)

But our beautiful moment changed very quickly when the woman examining Theo said, “Um, I need to talk to you. I say this because you’re about to get your tubes tied. I’m concerned about your baby in terms of tonal issues.” Tonal issues? What did that mean? I assumed she meant skin tone and that perhaps he was jaundiced. No big deal--Theo had a bit of jaundice at birth, too. What was the problem? I asked her to expand. And then she bluntly announced, “Your baby shows the signs of Down syndrome. Are you sure you want your tubes tied?”

I’m not sure I can even describe how I felt at that moment. Chris and I locked eyes, and without even speaking I knew that we were both racing through the same series of emotions. What? How could this be? We could see him over on the table--he looked perfectly healthy! He was 9 on the APGAR! He had a beautiful cry! Look at how pink and beautiful he is, not blue like some newborns! What does that mean--tonal issues? How concerned is she? Does she know he has Down’s, or is this one of those things like with Theo and Asperger’s: “Well, he shows some signs, so we should look into it just to be safe.”

In less than an hour, we had gone to happily waiting to welcome our child, to nearly losing him due to an issue with the umbilical cord, to hearing his beautiful, healthy-sounding cry, to seeing his beautiful little self, to hearing that he might have Down’s syndrome. It was surreal. I honestly wondered whether I was dreaming all of this.

I managed to calmly ask the woman what she meant, and she explained several things that made her suspect Down’s. “There’s no way to tell for certain without a chromosome test, and the results won’t be back for a few weeks,” she concluded. “Are you sure you want your tubes tied?”

And then I got mad. What was that supposed to mean? I realize the woman was just doing her job, but in the way she delivered the news, it was as if she was saying, “Um, this baby is broken. You might want to try again for a normal one.” Are you kidding me? As if this baby boy’s life was somehow less precious or worth less because he has an extra chromosome? As if we should alter our plan because “whoops, this one wasn’t what we wanted!” The thought rather sickened me. As I said, I know she was technically trying to do us a favor--if we wanted to try to have another child without Down’s, that wouldn’t be possible if they tied my tubes. But her delivery stunk--instead of letting us revel in the joy of our new son, she quickly turned him into some sort of flawed product, instead of the perfect little boy that he is.

Chris and I told her our plan hadn’t changed--we had our two sons, and our family was now complete. Yes, please tie my tubes. So they did, and I was on the operating table with silent tears streaming down my cheeks. Not tears that I had somehow produced a child that was less than what I wanted or expected, but tears that in his first minutes of life, he had already been treated as if he was less than a “normal” baby. And tears as I tried to process the fact that I was bringing into the world a child that would face some cruelty. Tears that the little boy that I already loved so much (and had from the moment I found out I was pregnant) was going to have a struggle in life. Tears of confusion because I just don’t know much about Down’s. What did that mean? I know enough to know that people with Down’s can have very full, happy lives--but I didn’t know what sorts of challenges specifically went along with Down’s. And here I was, literally strapped to a table unable to move, my insides still cut open on the other side of a giant sheet, feeling so very, very alone and vulnerable. Chris was right there with me, his chin held tight and he struggled to hold back tears. He whispered something along the lines of “We’re all going to be fine” to me, but I don’t think he dared say anything more, lest both of us just lose it. We had to hold it together. We needed to talk to each other, but not in an operating room with a bunch of people around, one of whom who had already made our beautiful newborn son sound as if he was some sort of disappointment.

It was the strangest mix of utter joy and relief at having safely brought him into the world, and utter confusion and disbelief about what we had just been told.

Let me stop for a moment here and say that we had no inkling the baby might have Down’s. We had turned down genetic screening while I was pregnant (just as we did with Theo) because we knew that no matter what any genetic test showed, we would carry the baby to term and raise him for as long as he lived. And those prenatal screenings can be notoriously inaccurate (a fairly high rate of false positives on some of them), and neither of us wanted to go through months of a pregnancy wondering, “What if? Does the baby have something wrong?” We knew abortion was not our plan no matter what, so why stress ourselves out?

And so, we knew going in the risk--that we could end up having a baby with some sort of genetic difficulty, and we wouldn’t find out until he was born. And that was fine with us. The risks for Down’s specifically are about 1 in 700 births, so we were certainly willing to gamble.

The mood in the operating room was a little different by that point. As I said, neither Chris nor I talked much--I think we were both afraid that if we opened our mouths, we’d just lose control and sob. I needed to stay relatively still for my surgery, so body-heaving sobs certainly weren’t an option. And Chris is very private about letting go of his emotions and always tries to stay strong for me, so he was trying to hold it together.

And so, we finished the surgery, and I sent Chris off to the nursery with the baby, so he could be there for all of Garbanzo’s tests, his bath, and such. I was alone in the recovery room with a nurse, who was very nice but obviously not Chris. I wanted Chris with me so badly, but even more than that, I wanted him with our son. Little Garbanzo needed someone with him who loved him and didn’t see him as somehow flawed. I was a big girl--I could take care of myself. But boy, I would’ve given anything to have Chris in two places at once!

In about 45 minutes, they were back, and I held my baby boy for the first time. (I had gotten to put a hand on him as he laid across my chest briefly in the operating room, but I hadn’t been allowed to hold him.) He was perfect. Six pounds, eight ounces of beauty. He has Theo’s nose and blond hair, as well as his little round head. And it was then that I saw what the woman in the OR saw: the telltale slanted eyes, the widespread toes, the extra folds of skin on the back of his beautiful little head. If you looked at him at some angles, he looked like a perfectly normal baby. If you looked at him at other angles, he looked like a classic Down’s baby. But he was beautiful, and he won both of our hearts within moments of us meeting him. Chris had met him earlier, while I was still on the operating table. Garbanzo was crying on the exam table in the OR, and Chris went over, took his tiny hand, and spoke softly to him, introducing himself. Garbanzo immediately calmed right down. And the same thing happened in the nursery, when Chris went with him--the moment Chris was near him, Garbanzo settled down. For me, the moment I held him he snuggled right into me and settled down. This little baby loved us--it was clear. He was barely born, and he trusted and loved us. (His big brother was much more suspicious as a newborn. I say this not to knock Theo in any way, but I joke that he kept staring at me suspiciously when I first met him. And for a long time, we felt as if he didn’t quite trust us. We were his parents, but he regarded us with as much skepticism as a newborn can--he didn’t immediately snuggle into us with that kind of parent/baby trust you expect. But knowing Theo now, he was just doing things his own way, as he always has. Garbanzo was just more your typical newborn--it’s Mom and Dad! I’ve heard their voices for a few months now! I love them!)

Chris and I finally had a few moments to talk--not many, as people kept coming to check on me and the baby, but a few. We decided to name the little fellow. We got out our list of 25 names and went through it, crossing off the ones that just didn’t look like him. When we were left with about a dozen, we started looking up their meanings. And this is how he came to be named Samuel Ames. Both names were on our list, of course, and the meanings turned out to be exactly what we wanted. Samuel means “God listened,” and we felt as if our prayers had been heard in those tense moments in the hallway/on the gurney, when it was anyone’s guess whether the baby would actually make it. Ames means “friend,” and the one thing we both know about people with Down’s is that they tend to be very open, kind, loving people. So this baby, we decided, would be a friend to all. Samuel Ames. It was perfect.

We were inundated by visits from nurses and pediatricians for a while after that. The pediatrician was able to explain the likelihood of Down’s: very strong. That is, they can’t say for sure without seeing the chromosome test, but he had seen many Down’s babies over the years, and Sam fit the profile. The second pediatrician said the same thing--summing it up by saying, “I can’t say for sure without the chromosome analysis, but yes, I think this is a baby with Down syndrome.” The nurses echoed this, too. All were very nice and complimentary about Sam and how sweet he was, but they all said they could see that he was a Down’s baby.

Okay, so this was it. He has Down’s. Understood. Of course we’ll wait for the test to come back, but there’s no sense in denying what’s obvious to the people in the field: If our baby doesn’t have Down’s, it will be quite surprising.

It was hours before Chris and I really got to talk, and when we did, we cried. Not really for the reasons you might think, though. It wasn’t an “oh my gosh, our son isn’t perfect” kind of grief. Rather, it was tears of confusion about what lies ahead for Sam. How will the world treat him? Obviously something like Down’s is far more accepted than it was even 20 years ago, but there are always going to be cruel people in the world, and our son was going to suffer somewhat at their hands. And what of his life? Would it be a good one? Rationally, we both know that it can be a very good one. Truth be told, Sam won’t know any different. Someday he’ll understand that he’s not the same as his big brother and the vast majority of other people his age, but to him, life will be normal. He might enjoy watching birds or collecting baseball cards or whatever while holding down a job and living either with us or perhaps in some sort of cooperative group situation. His life will never be one of aspiring to go to some prestigious college and win a Nobel prize or anything like that, but he won’t know that--he’ll know that he strives to achieve the goals that are important to him and to do the things that he’ll enjoy. The rest of the world are the ones who will know that if he didn’t have an extra chromosome, his goals could’ve been bigger or more far-reaching or whatnot. But to Sam, life will be life, and hopefully it will be a very happy one. He can do almost everything he wants to do if he tries hard enough--he’ll just have to try a little harder. He can have a significant other, get married, have a job, have friends, have interests, maybe even attend college--he’ll just have to work a little harder at some of it.

As I say, we know this rationally, but when you’ve just hours before been told that your child has something like Down’s syndrome, those rational thoughts are the ones you have to purposely focus on. Your first thought is more like, “Oh my god, this is the unknown. How will my child do X, Y, and Z? How hard will he have to fight? How will I make sure he doesn’t get hurt? How will I make sure the world is kind to him?”

And perhaps the thing that we struggled with the most was one person’s comments that “Down’s people can now live into their 30s or 40s.” What? You’re telling me that we will likely outlive our son? That is not what we needed to hear right after he was born. Granted, 30 or 40 years is far better than a child who is born and given a couple of years to live--we know that, just as we know that there are so many worse things he could have than Down syndrome. But again, it’s just a lot to process when you’ve just had what you were expecting to be a perfectly healthy baby! Lump that in with the stress of an emergency C-section and moments of wondering whether your child was even going to live--and you can see why we were confused and overwhelmed.

But now, with two days of Sam’s life in our pockets, here is what we know: Sam is amazing. And yes, we still periodically start to cry when we think about things like kids who will make fun of him as a “retard” or whatever kids say these days. (Back in my day it was “retard,” and I’m sure there’s some equally unkind term floating around nowadays.) But we remind ourselves that Down’s syndrome is a small part of what makes up Sam. It is something he has, not what he is. Right now, he is an incredibly sweet newborn who charms everyone who meets him. He is snuggly and loving and seriously the calmest baby I’ve ever seen. He is adorable and amazing and doing all of those cute newborn things they do! And someday, he’ll be Sam who likes to eat X, Y, and Z; who likes to play A, B, and C; who goes to school and studies D, E, and F; and whose hobbies include G, H, and I…oh, and who happens to have Down syndrome. And he will be Sam, who is loved unconditionally by his family. Whose best friend is his terrific big brother, Theo. Whose parents are his biggest champions (perhaps next to that awesome big brother of his). Who has goals every bit as important as those of his older brother. He will be Samuel Ames Small, man of many talents and much joy. He will not be Sam, our flawed Down syndrome child. He will be loved, and he will love.

And what of Theo? His world will be enriched by having such a special little brother. He will learn empathy and caring for others because of his bond with his little brother. Theo will have the same amazing life we’ve always expected for him--enhanced by the addition of one terrific little brother. I should note that he is already head-over-heels for Sam, and he is unbelievably sweet about trying to help with the baby. Notice the happiness on Theo’s face in this week’s pictures--he digs his little bro!

So that, folks, is what we have: two perfect little boys. They are the boys we were meant to have, and we cherish the fact that we were able to have them. We thank whatever divine entity saved little Sam in that labor/operating room. We thank fate for bringing us all together as a family of four.