Wow.

I cannot even begin to share how incredible the support has felt. Since starting this blog, both Matt and myself have received several messages and emails about Ryan. So many people told us that they've added Ryan to their prayers, are thinking of him, and wish him the best. We've also heard stories from people who know families who have been through this. Others have offered meals, dog-walking, or even to start a fundraiser to off-set medical costs. Like I said, it's been incredible and I love surrounding my son with such positivity.

I wanted to highlight one story in particular that just melted my heart. For those of you who don't know, Matt and I were Resident Assistants (RAs) together at the University of Maryland. For two years, we helped over 140 residents to navigate through the waters of college. And we loved it. It was one of the best prep courses for parenting that life could give provide. We still keep in touch with many of our residents. Which brings me to my heart-warming moment of the week. We got a message from one of our residents (shout out to Vanessa!) saying that her and a group of residents had been discussing how they could help us. They wanted to do some type of fundraiser to help off-set the cost of Ryan's surgeries. And they aren't the only ones. The fact that so many people have so selflessly offered to donate money to his cause leaves me speechless. And that really doesn't happen often ... ask Matt.

Fortunately, we have amazing insurance. So far, Ryan's medical adventures have cost our insurance company thousands and thousands of dollars - but for us, just co-pays. We have never felt so blessed to have insurance.  I cannot imagine the families that have to suffer through this AND worry about medical bills.  With that being said, I am very interested in setting up some type of fund for families with cranio kids who cannot afford surgeries. The idea is very young, but whether it's something that goes directly to the Children's Hospital in DC or perhaps through a fund just for cranio families around the world, it's something that I would like to do. We have been so fortunate and it would make me very happy to pay it forward.

Sometimes you see things happen that make you lose so much faith in humanity. But other times, like this, you remember that there are so many genuinely good people out there. Thank goodness we'll have so many examples to tell Ryan about!

Raise your hand if you're 5 months old and awesome!

Why I Love the Infants and Toddlers Program

Since he was a few months old, Ryan preferred looking towards his left shoulder. We noticed this early on and figured out that we all tended to hold him with our left arm (on our left hip). So, we began to switch him around and try different techniques to get him to look to his right side. My dad (who we lovingly call "Big T") even came up with his own "therapy" for it - he placed Ryan on the pool table on the Bumbo (totally not recommended) and would roll pool balls to his left and right to get him to follow them. That Big T is an innovative man. As he began to get stronger and more able to hold himself up, we noticed that his head was slightly cocked (his chin would point towards his left shoulder). Being the neurotic people that we are, we began frantically researching what this could be. The simplest answer that we found was torticollis. Basically, a really bad stiff neck (from say, 10 months of being crammed inside the stomach of a 5'4 woman).

At his four month check-up, the pediatrician (the same one who recommended Children's) referred us to the Infants and Toddlers Program to be evaluated for torticollis (we are just so ahead of the curve with our googling powers). He said that if it is torticollis, it can be fixed with physical therapy but needs to be done soon before all the surgery starts. We are so fortunate to have a neighbor who works for the program, so she put in a "good word" for us in efforts to expedite our initial request. Within a few weeks, a social worker and a physical therapist showed up at our house to evaluate Ryan.

They were both very warm and knowledgable, and took about an hour and a half to adminster the Brigance Infant and Toddler Screen that included physical, social, and cognitive items (and a lot of questions for us). They asked what goals we had for Ryan and I told them that honestly, I just didn't want him to be diagnosed with anything new. After all the testing, the physical therapist said that he did not have torticollis (WOOHOO!!) They said it was possible that he may have had it slightly but that we corrected it through things like holding him on the other arm (and obviously through rolling balls by him while he sat precariously on the pool table). Even better, he scored in a higher age range in many areas (okay, like one to two months higher, but in baby development world, that's kinda a big deal). Because of this, he didn't qualify for any services. When they told us this, they looked sort of nervous like we would fight it. Instead, we told them it was the best news we'd heard in a while!

We sat and chatted with them for a while after the evaluations (as they typed up and printed out their reports on the spot). I was reminded of how blessed we are when they said that it was refreshing to walk into a home and see a healthy baby like Ryan.

So aside from the fact that they were so caring and bright, let me tell you the best part about the Infants and Toddlers Program ... it's FREE. They show up to your house and do all of this for free. For FREE. Well, it's not technically free if you pay your taxes (which you all do, riiiiight?). Also awesome? Because they understand the importance of early intervention, they prioritize babies under the age of 12 months. If Ryan did actually qualify for services (by being below age level expectation in two or more areas), they would be required to draft up a plan (essentially a baby IEP) for how we could improve his development within 60 days. Although he did not qualify for services at the time of this assessment, they said that we could call back any time if we wanted them to come back out. They said that specifically, if he seems to not be making developmental gains after his surgeries, they will come back to the house and reevaluate him. Like I said, I love the Infants and Toddlers Program.

They also provided us with a great resource for parents. http://www.marylandhealthybeginnings.org/
This developmental domains chart tracks the expected milestones that babies should hit at certain ages. Obviously, it is just a guide and all babies are different. So don't get all neurotic like us and call the pediatrician if your baby doesn't seem to be hitting a milestone.

But if you're curious/worried, call the Infants and Toddlers Program because they are AMAZING!

A Blog?

So, I decided to start a blog. I know, it's shocking to me as well. I mean, I made it through my teenage years in a time where everybody and their mother had a LiveJournal ... and this is my first blog. But it comes with a purpose. When my son, Ryan James, was born on December 17, 2012, we were thrown into parenthood with a bang. Right in the delivery room, the pediatrician told us that Ryan was born with a glandular hypospadias. Basically, his urethra is slightly lower than where it should be. They didn't circumcise him because they knew that they would need the skin for a surgery down the road. Great. The kid isn't even 30 minutes old and we already know that he'll need surgery. We were told that it is "the most common birth defect in boys" with the chances being 1 in 2,000. I don't know if they think it's comforting to hear that your baby has the "most common" birth defect. Maybe they should take out the whole birth defect part to put your mind at ease. Maybe we were also just incredibly neurotic and waiting on pins and needles for the arrival of this baby ... mostly to see if he would be a healthy baby or not. Maybe I should rewind a bit ... 

At our 13 week prenatal check-up and first ultrasound, the doctor served us quite the sucker punch. After about 25 minutes of a blissful scan of looking at our baby, he came into the room and said that something was wrong. The nuchal translucency screening revealed that he had an elevated reading of 3.4 mm. Generally, this number is supposed to be under 2.5. He told us that, without a doubt, something would be wrong with our baby. I had never felt so crushed in my life. Rubbing salt on the wounds, he told me "it's a good thing that you don't look pregnant" and that he hoped I didn't tell anybody that I was pregnant. When Matt asked him if he was trying to insinuate that we should abort the baby, he just reiterated that something would be wrong. Matt and I sobbed for days. We met with a genetic counselor who assured us that it could be absolutely nothing .. or something real big. She also said that that doctor is only in on Tuesdays and we may want to schedule our future scans with that in mind. Once the blood tests told us that it wasn't likely Trisomy 13 or 18 (the ones which our doctor said "the baby just won't be compatible with this world), we took our 1 in 72 chance for having a child with Down's Syndrome and said that we will love him or her no matter what. We were placed in the higher risk category (shocking considering that I was 26 and had no family history of any genetic syndromes) and got monthly scans. We had a thorough scan and check-up with a cardiologist (an increased NT reading often indicates problems with the heart) and were cleared (although we did need to revisit her a few times once we were discharged from the hospital because Ryan had a low heartbeat). The poor guy even had a Holter monitor on his tiny body. 

Poor little guy :( He had to wear this for 24 hours! 

Anyways, Ryan came out and other than the hypospadias and low heart rate (which was dismissed at a one month follow up with the cardiologist), everything looked great.

Until his two week checkup happened. One of the pediatricians at the office felt his head (which was surprisingly round for a baby that arrived via natural delivery) and said it didn't feel right. We had observed an "egg" on the back of his head, but were told that it may have just been trauma from birth. She said that we should keep an eye on it, and that it could be nothing at all or potentially be something very major (what IS it with doctors saying this? Is it supposed to be reassuring?) Awesome news for two new parents. 

At an early check-up. His full head of hair did a good job at hiding that egg!

Flash forward to Valentine's day. Ryan was running a fever and a cough so I took him in for his first "sick visit." Another pediatrician came in and was doing the standard check-up when she felt for his soft spot. She had the most confused look on her face. He never had one, other than a spot about the size of a pencil eraser. She looked at me and said, "I'm going to be honest with you. I'm not really worried about his fever or cough. You need to get a CT scan right away." She brought in another pediatrician (who happened to be both mine and Matt's pediatrician when we were babies) and she felt his head as well. She smiled at me and placed her hand on my leg and said, "Yeah, that's not right. It feels like he has craniosynostosis." What. My heart dropped and eyes filled my tears. I was pretty sure this was the "very major" thing that the other pediatrician was talking about. I had never even heard that term in my life. Even typing it on here, it gets the red squiggly line underneath it. This blog hasn't even heard of it. They left the room and said that they would call ahead so that we could get a CT scan that day. I scrambled to call Matt (who was at work) and told him what was happening and he met us at the office. Fortunately, Ryan held still for the scan (otherwise he would've needed to be sedated). Unfortunately, the preliminary results showed that his sagittal suture (along the back of his head) was completely fused.

As infants, our skulls remain open to allow for the rapid rate at which the brain grows (and also to allow for a head to fit through a space that doesn't look like a head should be able to fit through). Since Ryan's sagittal suture was already completely fused, his brain (and extremely pliable skull) would make way by growing out the front and back, resulting in a very long head. Hence, the egg on the back of his head. Cranio (of the cranium) + syn (together) + ostosis (relating to bone). AKA his plate fused too soon and we've gotta do something about it. The chances of being born with craniosynostosis? 1 in 2,000. If you put them together 4th grade probability style ... a baby boy has a 1 in 4,000,000 chance of being born with a hypospadias and craniosynostosis. 

I went home and sobbed. And sobbed. Never in my life had I been so devastated. My perfect baby. Major surgery. I was depressed. I was scared. I was pissed. I opened the computer and did a quick google search. It was just too much to look at - the pictures, the different surgical options, the unknown factors ... is this part of a larger syndrome? Is there any intracranial pressure (is his skull exerting a force on his brain)? 

This was taken right around two months. By then, the back of his head had become noticeably more pronounced. In addition, his forehead began to bulge slightly.

The doctor called her contact at Johns Hopkins (she had recently had a patient go through this) and we were given a consultation appointment with their pediatric neurosurgeon for March 26th (nearly 6 weeks away). We told them we were worried that waiting would narrow down the list of options that had. We had also read about intercranial pressure (ICP) and when we told them that, they said that if he starts showing signs of it (vomiting, non-stop crying, etc.) we could move our appointment up. Basically, wait until the situate is worse and THEN we'll see you. I'll admit it. Matt and I went into John Q mode. No freaking way were we going to be handed this diagnosis and then just wait around, checking obsessively for signs of ICP and relying on the internet for information (even at our pediatrician's office, a well-known upcounty office, they had only seen a few cases). We went into his two month check-up on the 17th and told the pediatrician that we just couldn't wait. We needed to see somebody sooner and he agreed. Fortunately, he had recently referred a patient to the neurosurgeon at Children's Hospital and could get us in on February 26th (the doctor was going to squeeze us in as he only sees patients for consults once a week). He also told us that Ryan's hypospadias should be put on the back burner (we had seen a urologist earlier to begin the process of scheduling surgery). 

At the appointment, we met Dr. Keating. The word amazing doesn't do this man justice. He spent over an hour with us, answering every question we could think of and telling us stories about patients. We mentioned the name of a family friend who had a similar surgery years ago, as well as the name of one of Matt's students (who had surgery with Dr. Keating nearly a decade ago) and he remembered them instantly. We were immediately put at ease with this man. He measured Ryan's head and gave us a number on the cephalic index (essentially a ratio of the width and length of a head) of 69, saying that 75 is really the bottom of the "normal" range.  He explained that we had four options. The first, which he said he felt obligated to offer, was to just leave it as it is. Fortunately, Ryan's form of craniosynostosis is rarely accompanied with intracranial pressure. Therefore, we could leave it alone, but he would be, as Dr. Keating put it, "tortured in school." As a fourth grade teacher, I know how rough kids can be and I would never want to put Ryan through that. The next option was called a cranial vault remodeling (CVR) and is an 8-10 hour surgery where Ryan would lose 100% of his blood throughout the day. Basically, they go in there and break up all the plates. Fortunately, he said that he didn't think Ryan would require this. Third, he said that we could do a minimally invasive surgery but that Ryan would need to wear a helmet 23 hours a day for a year. We had researched these two surgeries prior to our appointment and the CVR made us cringe, but the idea of my son spending that much time in a helmet made me shudder just as much. He offered a fourth option, called the "pi procedure." Basically, they cut out bone in the shape of the pi symbol, allowing room for the brain to grow. He would need to stay in the PICU for 2-3 nights, mainly as a preventative measure.

He felt that Ryan would be a great candidate for this, and said that it could be done in under two hours. On a shallow note, we were happy to hear that he would not need to shave Ryan's head and that the scar would be difficult to find after a few years. I got tears in my eyes as he said that as long as Ryan was in his care (throughout the surgery and the years of follow-up appointments), he would be one of his sons. Reading this it may seem like "gag, how insincere" but honest to God, I felt like I could trust this man. And we needed that. It was also great that he knew the urologist (also through Children's Hospital) who would be correcting Ryan's hypospadias this summer. 

And what a blessing this man turned out to be because at Hopkins, we got nearly the opposite feeling with that surgeon. He seemed cold and our visit was rushed. He said that we could choose between the CVR or the helmet surgery (his speciality) but that we'd need to do it ASAP because the results were best when the child was under three months. We walked out and Matt said, "Well, Children's it is!" So here we are now, with a surgery scheduled for July 3rd (our third wedding anniversary). His hypospadias surgery (or "penis surgery" as we lovingly refer to it as) will be August 15th. 

By 3 months, his forehead was much more pronounced. It's okay for me to say it,  but when the Hopkins doctor said it, I was SUPER offended.
PS - even with the cranio, he's quite the ladies man.

I know it sounds dramatic, but I think that if we can get through this, we can get through anything. I pride myself in my positive attitude and trying to always see the bright side in a situation. But to be honest, these diagnoses have been very challenging for me to handle. Like I said, this has been crushing. And some days I feel so sorry for Ryan, and for us too. This is so much for new parents to handle. He didn't come with a manual .. but if he did, I have to say that I don't think this would be in there. I've lived my life as a control-freak, a perfectionist in many senses. However this is something that I can't fix. It isn't something I have any say in. And I hate not having a say in something. 

One thing that I selfishly find comfort in is the fact that every day, parents all over are getting diagnoses that are so much harder to handle. News that their perfect babies have something that a few surgeries cannot fix. Something that their perfect baby may not survive. So this? This is tiny. This is our initiation to parenthood. A lifetime of worrying. A lifetime of loving somebody more than you ever thought was possible. 

So I will get back to my point about this blog having a purpose. After I was eventually able to get over the initial shock of the diagnosis, I found a lot of comfort in reading blogs written by families who had been through this. One thing in particular was that hearing the diagnosis for the first time is the roughest part. Many refer to it as a journey, offering words of encouragement to parents like us by saying things like "we'll see you on the other side" (referring to being post-surgery). I think this sounds slightly morbid ... but it's something that I very much look forward to saying on July 3rd.