Sacral Dimple

Torsten will probably be furious someday about having a picture of his bum posted online, but since I had no idea what a sacral dimple looked like before he was born, I'm assuming that most of you don't either. I'm also assuming that you've all seen a baby bum before...

Image removed due to sick-minded people trolling the Internet.

Operations Management

We've just returned from our day of baby doctor appointments and it looks like 2013 will be the year of the operations for little Torsten. Our first appointment of the day was with his pediatric ophthalmologist. For those of you that haven't yet met Torsten, his eyes can sometimes run a little wild. They don't necessarily cross, but they both seem to have a mind of their own. According to the doctor, we should give him a couple more months to let his eye muscles develop, then re-measure them. In the end though, he doesn't have hope that the problem will fix itself and that we'll have to fix them surgically. It looks like this will happen sometime this spring.

Our next appointment was with the pediatric neurosurgeon. Since we already knew going into this appointment that surgery would be necessary, there were no surprises. The good news is that according to the doctor, "this surgery is huge for the parents, but small for the surgeon". I can't say that this makes me feel much better about my son having surgery on his spine, but I'm at least thankful that it's not the most complicated thing on her schedule.

We asked quite a few questions, so I'll try to list a general Q&A below.

Q: How common or rare is this condition?
A: She performs ~20-25 of these operations per year (her office holds the only pediatric neurosurgeon practice in Dallas).

Q: Risk/chance of re-tethering?
A: She believes that she can completely solve this issue and that the chance of re-tethering will be ~1%, which is amazing.

Q: What is the link to Spina Bifida? Does Torsten have Spina Bifida?
A: The two (tethering and SB) are often linked, but Torsten does NOT have SB.

Q: Are Torsten's chunky feet related to this issue?
A: (quote) "Wow, those are some chunky feet, but no, probably not related." :)

Q: Is this condition genetic?
A: It could be. There is not enough evidence to say yes or no definitively.

Q: What is the surgery like?
A: The surgery itself should take 1-1.5 hours. Anesthesia before and after, adding another 45 minutes or so on each end. He'll need to spend at least 1 day and night flat on his back in the hospital and can go home once he seems fine, is himself and is eating normally again. Parents can stay with him and mom can sleep with him and cuddle him. :)

Q: Anything we need to do beforehand?
A: We have to see a urologist to check if any damage is already present and to have a base for comparison afterward. One of the most common problems associated with this problem is bladder issues. She said that we may not be able to toilet train him, but we'll deal with that when he's 3 years old if the problem presents itself.

Q: When should we have the operation?
A: As soon as we're ready in the next few months. It is planned that we will probably schedule it for February.

If you have any other questions about Torsten, sacral dimples, tethered spinal cords, etc., please don't hesitate to ask. We're educating ourselves along the way and are becoming better versed on the issues everyday.

Ryan and I are doing really well after the appointments today. Even though Google can be the enemy when it comes to researching your child's medical conditions, we were both glad to go into the appointment armed with some general information. Being prepared to hear that our child would need surgery on his spine saved plenty of unnecessary tears from being shed today and we were actually relieved to hear that it is not any worse than we thought it would be. I hate that our son has to go through all of this, but we're extremely fortunate that it's manageable and that we live in a time and a place that allows for such treatment.

Thank you all again for your sweet emails, texts and calls. It's been a long week, but things are really not so bad. Mister T will get through this and hopefully won't remember a thing about it. And we'll do our best to forget the bad parts and just be happy that we have him in our lives and that, in general, he's a healthy, growing baby boy.

Sweet baby boy patiently waiting to be taken back for his MRI

Home from the hospital, but still feeling the anesthesia

A little baby MRI

We did exactly as we were told to do - we didn't worry, we didn't assume the worst and we just lived our lives and enjoyed our little man. At Torsten's 4 month checkup, the topic of the 6 month MRI came back up. We discussed it with his pediatrician and decided that we would try to schedule it for December. So... it's December. Even so, we were sure that this was all just precautionary and that everything would be fine.

The MRI was last Tuesday at Children's in Dallas. We had done our best to prepare ourselves, but weren't thrilled about the idea of starving our baby so that he could be put to sleep for the procedure. We were sure that he would be screaming his head off and generally making everyone within earshot hate us. We were wrong. I was the one who was a mess. My son was a trooper. He didn't cry, smiled, entertained the nursing staff, breezed through all of the prep and allowed multiple people to poke him, prod him and pick him up.

After several delays, they finally took him back 2 hours later than expected, so by that point, Torsten hadn't eaten in 6 hours. They told us it would take an hour max, maybe less, and that we should grab lunch and not worry. Two hours later, I was worried. They told us then that it would be a bit longer. By the time we were reunited with our son, it had been nearly 3 hours and I'd had a series of emotional breakdowns in the waiting room.

When we went back to the room, they said he'd done great. He was just coming out of anesthesia and was fussy, loopy and starving. He was hooked up to about 10 cords, wires and monitors, but we were still able to get him fed without too much trouble. They told us that we should have the results within 2 days, and that as soon as he'd been fed and dressed, we could get out of there. They didn't have to tell us twice.

On Thursday, I called our pediatricians office to check for results. They hadn't received anything, but the nurse said she would call Children's to have them sent over. She then called back to say that she had received the brain scan (another MRI that he'd had for a separate issue) and that everything was fine. I asked her about the spinal scan and she said nothing had been received, but that she would call again and would call me right back. Then... silence. Hours later, I called back to see what had happened and was told by a receptionist that the nurse, whom I could hear in the background, would call me right back. I knew then that she would not be calling me back, that I would shortly be hearing from the doctor herself and that it wasn't good news. We'd been here before.

When Dr. McClard called back, she confirmed my fears - Torsten's spinal cord is tethered. I think that I asked her several questions, but I really don't remember exactly what they were, nor do I remember much from her responses. I believe she said something about a "lipoma", and I know she said that he does NOT have Spina Bifida. She told me that we needed to get into see the neurosurgeon asap and that Torsten would probably need an operation. She also told me not to worry. Sure.

I spent the remainder of the night crying, researching and reading things that I should have avoided. I only slept a couple of hours, but woke up on a mission and with new perspective. Rather than thinking "Why me?", I had to question, "Why not us?". We have good jobs, insurance, great doctors that identified the problem early, a great support network, bank accounts that aren't in the red yet and we love our son to the moon and back. We're the kind of people that have the determination to see this through and the ability to make it happen. I would do anything to avoid having my son go through this, but it happens, and if it's going to happen to anyone, it should be us.

My first call of the morning was to the neurosurgeon. When I first spoke with her office a few weeks ago, they told me that they had no open appointments until late January. Now that they had my son's MRI in hand, they were magically able to work us in on Monday. Great that they were working us in; bad that they did it because they were staring at my son's MRI results. Whatever. We'll take it.

So after calls with doctors, insurance reps and the hospital, we're heading to our appointment armed with far too much Googled information and a laundry list of questions. From what we've heard and read, surgery on his spine is imminent and time critical. We've accepted this now and just want to get the show on the road. We already know our kid's a trooper, so we can only assume he's ready too. Between this ordeal and the recent elementary school shooting in CT, my poor kiddo is really getting tired of the constant squeezes and kisses. He'll just have to adjust.

Introducing Torsten!

Torsten was born on Thursday, June 28, 2012. Unlike his parents with their chronic tardiness, he arrived 2.5 weeks early. A sonogram the day before he was born showed that my amniotic fluid level had continued to drop and was dangerously low. That combined with the fact that he was breech and his leg had stopped growing led us to a planned cesarean birth.

After he was born, there were some issues with his blood oxygenation and he had fluid on his lungs, so he made a quick trip to the NICU, but was out in no time. We spent the next 3 days in the hospital bonding with our new treasure. Torsten had swooped in and, overnight had become our world.

At the hospital he slept constantly. We were sure we'd hit some kind of baby jackpot. The nurses commented on what a calm and content baby he was. Of course this all changed the night he came home. We had a side-sleeper all ready for him next to our bed, with clean sheets and a pacifier tucked in the corner. That same side-sleeper has yet to be used and is now housed in the attic. Better luck with another kiddo. Torsten alternated between sleeping in our bed and his crib for the first couple of months. We took plenty of criticism for the co-sleeping, but it worked for us at the time and I don't regret it one bit. When you're waking up every 2 hours to feed a crying baby, it's much more convenient if that baby is right next to you than if he's four rooms away. That being said, I was ready to evict him after a couple of months of bed sharing. Daddy was ready for him to go sooner.

At the 2-week appointment with Torsten's pediatrician, they found a dimple just above his bum. We had noticed it, but didn't think anything of it, since plenty of doctors had examined him both in and out of the hospital and nothing had been mentioned. Now though, Dr. McClard was concerned enough to order an ultrasound. She said that it could be nothing, but because his sacral dimple was deep enough that she couldn't find the end of it, we would need to have it checked.

For those unsure of what a sacral dimple is, it's an indentation, either shallow or deep, at the bottom of the spine/back. In Torsten's case, there is a small hole in the center of the dimple. The depth of that hole was the cause for concern. So off we went for an ultrasound.

While waiting to be called back for his ultrasound, I remembered a test I'd had done during pregnancy that had come back with abnormal results. It was the Spina Bifida test and I had gone to a specialist afterward to have everything checked again. According to the specialist, everything had been fine and we had nothing to worry about. I hadn't even thought about those test results for months, but now, sitting in the hospital waiting room, it came back to me like a tidal wave. I started furiously doing searches on my phone and was completely panicked by what I was finding. A sacral dimple can very well be a sign of Spina Bifida. I couldn't believe it hadn't occurred to me before.

We got the results of the ultrasound on a Friday afternoon. They were somewhat vague. They said that the end of his spine was in extremely close proximity to the dimple, but weren't conclusive as to whether or not the spine was connected and/or if there was a larger problem at hand. Dr. McClard explained that she is not an expert in this area and that she would need to consult with a neurosurgeon for a definite answer as to what was going on and what we should do. Since it was a Friday, it wasn't hopeful that we would hear anything back until Monday... or Wednesday. Apparently neurosurgeons are too busy to reply to little pediatricians or to put worrying parents out of their misery in any less than 3-5 business days. At least the news, however late, was not terrible. We were told that we should not worry, but should have an MRI at 6 months just to be sure nothing is wrong.

So we went on about our business, watching our handsome little guy grow, love life, play and learn new things every day. What a joy the past months have been. Torsten is an adorable baby and we are often told that he looks like an actual doll. I was recently asked by a 4-year old girl if he was real or if he was a baby doll. He's also extremely sweet and is constantly caressing our faces, arms, hands and whatever else he can reach. He's very curious and loves checking out new things and places and loves to read books. He's funny and loves to smile, laugh and have lengthy discussions with anyone who will talk to him. He's independent and often likes to just be left to do his own thing, mostly flopping around on a blanket on the floor. I'm grateful everyday that I get to be his mommy.