Tuesday, July 13, 2010

Kanga & Little Roo, bringing you up to speed

This is it, friends. This is the post that will bring you to our current state. In some ways I am excited to have us all on the same page, in other ways I feel almost sick to my stomach to type it out and see it in black and white. But for better or worse, here's what came next…

At this point in Roo's life, we had almost come to expect complications. Neither my husband nor I batted an eye when our pediatrician told us that she had some "concerns" at his 2-month check-up. We simply listened as she explained a few things she had noticed—an unbroken crease across the palm of his hand (I know that you are checking the palm of your hand now. Most of us have 2 long creases across our palms, but neither of them goes straight across the entire length. He has a single long crease the entire length of his right hand.), an arched palette, and just something different about the set of his eyes. Still, she didn't seem overly concerned. In fact, my husband and Lamb both have the same crease (called a Simean crease) on one of their hands, so it seemed like no big deal. She just wanted us to see a geneticist to rule out the possibility of a bigger issue. She didn't even give us a specific thing she was looking for—she simply said she would feel better if we had some genetic testing done on Roo. She explained that they would just do a blood test, and that it might take "a while" to get the results, and she could just go over them with us at his 4-month visit. I was actually more concerned with the fact that she insisted on treating Roo as a "normal" infant instead of adjusting his growth chart to one they would use for a preemie. She explained—and I did understand—that it was difficult to know how far back to adjust, since he wasn't really a preemie. But it seemed to me that we should be able to look at his size and level of development at birth and make an educated guess as to where he would fall. I made it my mission to investigate where he seemed to "fit in" on the preemie scale.

I went home and called the number at Children's Hospital that day. We were able to get in exactly one week later. It was a little scary, but honestly we weren't that worried. We decided to keep the appointment rather quiet—we told only our parents and a couple of close friends. We really couldn't see that anything could come of the appointment, and we didn't want to worry anyone needlessly. In the meantime, I determined in my own head that he seemed to be about a 32-week preemie. His birth size and current size both fell right into the 50th percentile for that timeframe, as well as his development level at birth and his current "milestones." It was far from an official medical determination, but I thought it would help me in my own head if I could have an idea of how to "adjust" his development—the doctor at Children's (the week that we were there after he was born) had told me that he may track like a preemie, and it seemed like he was doing so. No big deal.

I didn't think too much about Roo's appointment until the night before we were scheduled to go in. The geneticist's office had sent us some paperwork to bring with us to the appointment, and I had yet to fill it out. It was overwhelming to sort through not only Roo's medical history, but mine and my husband's as well. I am adopted, and while I now know both of my biological parents, I have often been frustrated with having limited knowledge of my own family medical history. I have struggled in the past with worrying about what I might unwittingly pass on to my children, and it was all coming back as I tried to fill out a family tree for the doctor's office. I didn't even know what exactly the geneticist would be looking for, but the idea that whatever "it" might be could be inherited made me sick to my stomach.

On the day of the appointment with the geneticist, my dad came over to watch the big kids. My mom, who had just retired from her job in the school district, had one last meeting that morning and would come over to join my dad when she was done. We actually thought it might be a very short appointment—go in, get a cursory exam of Roo, get some blood drawn, go home and wait. In fact, when we got to the office we parked at a meter—we didn't have very much change on us, but thought it would be fine because surely we wouldn't be there very long.

In some ways I feel like that appointment will be forever etched on my mind, and in others it seems like a blur. We saw a nurse first who ran through the basics that you do at pretty much any doctor's appointment for a small child—height, weight, eating & sleeping habits, milestones reached (a pretty short list at 2 months of age), etc. Then a genetic counselor came in, and she explained what the doctor would be doing that day, and again asked us about Roo and what kinds of things he was doing so far. We were happy and upbeat, chatting with the nurse and counselor, truly not worried about anything that might happen that morning. We had already been there longer than we had anticipated, though, so while we waited for the doctor to come in, my husband got change from the receptionist and went down to feed the parking meter.

Finally we met the doctor. He was very knowledgeable about Roo and his history—it was obvious that he had sought out and reviewed Roo's charts, including everything from his stay at Children's when he was first born. We were impressed. He began his examination of Roo, and reiterated the "quirks" that our pediatrician had noticed at his 2-month appointment. When he mentioned the Simean crease, my husband immediately showed the doctor his palm with the same characteristic. "Yes," the doctor quickly agreed, "it definitely can just be a family trait." We nodded and smiled, waiting for him to say that everything was fine, or maybe that he didn't suspect any problems but wanted to run some blood tests just to rule out any problems. Instead he said, "But it can also be an indicator of Down syndrome, which is the case here."

There are no words to describe what happened in my head at that moment. It was truly like I had been hit by a truck. I had not seen that coming, not in a million years. I could not grasp what he had just said. Did he really just say that the baby—MY baby, MY ROO—had Down syndrome? It was surreal. It wasn't possible. He'd said it so matter-of-factly. Like he was telling us, "This is a boy." Like it was so obvious that he shouldn't even have to say it. Down syndrome.

And then it was like my brain split into two parts—the part that was trying to keep it together so that I could listen and be aware of what was happening, and the part that was shutting down and refusing to hear anything more. He explained that we would have to take Roo to the lab and get some bloodwork done, but he also explained that this would simply serve to confirm his diagnosis and that he was "fairly certain" of the diagnosis based on his examination.

I don't know what else to tell you about that appointment, because the rest is truly just all one jumbled mess in my head. He did say that Roo's symptoms are quite subtle, but also expressed surprise that no one had come up with the diagnosis before—especially during his stay at Children's, when (this doctor felt) they probably should have done some genetic testing just to try to understand his other problems a little better. And then we saw the counselor again, who gave us a book called Babies with Down Syndrome and encouraged us to take things at our own pace—the book was there whenever we were ready to start it, but not to feel pressure to sit down and read it cover-to-cover. On the front was a picture of a sweet little boy, maybe 2 or 3 years old, who obviously has Down syndrome. I immediately turned it facedown. "That is not my baby," I cried in my head. I couldn't even begin to imagine my little boy looking like that, and at the same time I felt an intense guilt for being so shallow and vain. But it truly wasn't the face—that little boy was absolutely as cute as can be—it was what it represented. A different child. A different life. This was not what I signed up for. This was not my reality.

Yes, there's more to tell, so maybe I should have titled this post a little differently. But this is really "it", what this story has been building up to. I'll post more soon.


Jan said...

Thanks for sharing this- big hugs for you guys- I think you are doing a great job and your little one is so precious.

Jamey... said...

Much love to you all. I know the "this is not what I signed up for" feeling so well these days as well. Not in the same vein as you, but I do get that dichotomy between anticipation/reality.

Emma @DivorcedBefore30 said...

Wow. What an emotional time for you. I can't imagine what this would be like, but you did a beautiful job explaining your feelings. Thank you so much for visiting my blog on my SITS day. I really appreciated all of the great comments.

Garn said...

Thanks for sharing! It is refreshing to know that someone has recently gone through the emotional roller coaster that we did. Your story made my day better.! Thanks again!!

Patti said...

oh.my.gosh. are you serious??? I have been reading all the posts up to this...they took TWO MONTHS??? to figure it out??? I am in shock. I am crying, and I don't even know you. hugs hugs hugs to you, little mama.