We're Still Here!

First of all, know that I get anxiety over not posting. I literally think about it every day on my way to work. I think, mannnnn I just left people hanging on the cliff, waiting to see what happened. Except that most of the people that read this know exactly how Ryan is doing, pretty much every day. But still, it's nice to write an ending to a story. And I pray that this is the ending! 

Life has been super busy now that school is back in session. I think I also used this blog as a form of therapy. I was able to put into words how I felt. And I'm happy that I documented the whole process because I can hardly recall a lot of the nitty gritty at this point. When it was happening it was as if time were crawling, torturing me with what ifs. Looking back, it is just one big blur. It makes me think of the Maya Angelou quote about how people never forget about how you made them feel. While I can't recall every medical detail, I will never, ever, forget how I felt. I get tears in my eyes thinking about the first time that that ass of a doctor told me that there was likely going to be something wrong. I can remember the pediatrician, months later, looking me in the eyes and telling me that something was wrong. And, more than anything, I can remember the pain of handing Ryan over to the surgeons and praying that I would get him back. 

My thoughts are all over the place as I try to recap events, so let me start from where I left off. 

At Ryan's post-op with Dr. Keating, everything went very well. He said he was extremely impressed with how Ryan was recovering.  He said that he rated the results an "A," and called it a "home run." He was hesitant to call it a "grand slam" (he likes to use the baseball terminology with Matt) because Ryan's forehead is still fairly prominent. He said that this could take a few years to go down. But other than that, his cephalic index had already gone up to .74. We were surprised to learn that most of the spaces that he opened up would close within the next few months. With the exception of two narrow gaps, the majority of the pi symbol is closed. The most promising thing that we were told is that he's never seen a child with results this great that needed another surgery. So now, we're waiting until his next appointment in November. His scar is healing great and he is growing this ridiculous, unruly hair to cover it up. 

We now look back at his pre-op pictures and cannot believe it. It just goes to show that every mother thinks her child is the most beautiful child in the world. Because we just didn't see it. We didn't think his head looked strange until it was fixed. And now that it's "normal," we cannot believe how "abnormal" it used to look. We couldn't be happier with the results.

Okay. Onto the peenie. We decided before this surgery that we needed to speak louder about going back with him when he was put under. We suspect that a lot of the stress lingering in Ryan from the last surgery was over separation anxiety and being taken back into the operating room confused and alone. We had been told at our pre-op appointment that this would be okay and that the local Children's surgical center isn't as strict with the policy as the DC one. When we arrived early on the day of his surgery, we got mixed messages. Ultimately, we were read the riot act by the nurse and anesthesiologist. They said that we needed to know what we were getting into and that it's very upsetting to watch. They said that I would have to restrain him while he put the mask on and that he would start screaming (which would be good because it would mean he would take in the gasses quicker). Then, his body would start to convulse. They told me that it's hard to watch your baby go through that. I told them that I've watched him recover from skull surgery and that I doubt it could be harder than that. Furthermore, if it made it easier for him, I didn't care at all about the emotional strain it would place on us. They reluctantly agreed. We went back with him and I held him as they placed the mask on his face. The strawberry smelling gas slowly seeped in and he groggily tried to lick the inside of the mask (making us all chuckle a little). He quickly fell asleep and we were ushered out. 

On a side note, we don't really suspect any longer that he was temporarily scarred by the whole process the first time around. That's a super scary experience and to go through it without any familiar faces (in a room full of 10-12 strangers) must have been terrible. 

We were told that it would take as long as 2 and 1/2 hours (surprising, considering how long his head surgery took) so I went and got coffee and then came back to update the blog and pass the time in a way that I had grown comfortable doing. ADD side note again - The funny thing about the previous section (about his head) is that I had written it down in an entry that I began in the hospital while waiting for his peenie surgery to be over. But then the doctor came out nearly an hour early. 

Yes, the doctor came out early. And our hearts dropped. I'd watched too many movies to think anything other than the worse. He smiled at us and said that his hypospadias wasn't as bad as he originally diagnosed. Because of that, there was less work to do and he didn't need to put in a catheter. We were so relieved. I couldn't even wrap my head around how to keep an 8-month old from tugging at a catheter so I was so thankful. He stayed in the hospital for a few hours and then we took our baby home. He was upset for a few days and had a lot of Tylenol and Motrin, but recovered fairly quickly. At his post-op, Dr. Sparks said that it looked great. 

We've since had a few concerns about it opening back up (there's about a 15% chance of this happening) so we are going back in tomorrow to get it checked on. It's difficult to diagnose because you have to be watching him urinate to see if it's coming out of his urethra or from any other places. I guess only time will tell. 

I have some huge take-aways from this whole experience. I know that I've reflected on it a few times before, but now more than ever, I am so grateful that this is all that we have had to deal with (hopefully). If this is it, we are more than blessed. After being in Children's and seeing what other families have to battle or even reading other mom's blogs about their experiences with cranio, we are so lucky. Sure, we were thrown into the flames of parenthood early on and had to learn to manage quickly. But, we were surrounded by our family, friends, and an amazing medical team. We also have insurance that can't be beat. How much has this craniospadias cost our insurance company so far? Over $66,000. 

So, we blissfully walk away with our renegade. Our little badass with a scar that he can brag to his friends about. And we walk away a little taller knowing that we survived the hardest challenge we've ever been presented. Bring it on, parenthood. 

It's Been a While

I haven't been able to get around to posting because it's been so hectic! The first few days (week) home from the hospital were rough. The first day back was particularly scary because Ryan ran a fever of 101.9 and we were instructed to call Children's if this happened. We talked to the nurses and anxiously followed instructions to check for signs of meningitis. If his fever continued, we would have to go back. We wanted to be done with it all! Fortunately we got his fever down and did not have to return to the hospital.

Ryan was clingier than he'd ever been and was super fussy. We've always been fortunate and had a very content baby, so it was stressful and frustrating to all of us. We were giving him Tylenol and Motrin (rotating each one every 4 hours for maximum pain management) but he still seemed to be upset and we couldn't decipher his cries - was he in pain? Was he scared? He seemed so anxious and the worst of it came when he was tired. We think he was very afraid to go to sleep ... possibly because he was worried of what would happen when he woke up. We figured that when he was in the hospital, every time he woke up he was poked and/or prodded at ... blood draws, temperature checks, IV fiddling, etc.  (I used my Mommy Spidey sense to  hypothesize all of this by the way.) Just to be sure, we took him to see the pediatrician. I told them that I wasn't stupid and was aware that he had neurosurgery and it could be the obvious cause of his fussiness, but that I wanted to make sure that it wasn't anything else (teething, ear infection, etc.). He didn't see anything wrong but did contact the neuro department at Children's to make sure that there wasn't a plan of action that we should be taking. They said that Ryan holding down food and not being overly sleepy was a good sign and that we should just keep them posted if this continued. If it did, we would have to go back for a CT scan.

We decided that one thing that would help would be to get him on a better sleep schedule. Baby sleep is like a whole new level of difficulty. They don't sleep well during the night if they don't sleep well during the day. And they don't sleep well during the day if they don't sleep well at night. That seems legit. Well, we decided to start with baby steps and go back to the bed time routine we had before surgery. When it was time to go down, we just put him in his crib. He cried for a few minutes and then SLEPT THE ENTIRE NIGHT. It was literally an overnight change and we were so thankful. Since that night, we've been sticking to a pretty routine nap and bedtime schedule and it's been working. He is not any fussier than usual and seems to be pretty happy. Forget the saying "happy wife, happy life" ... it's "happy sleeping baby, happy life."

We have been so, so satisfied with the results. We don't know if it's the testosterone but his hair is growing back quickly. The stitches are slowly dissolving (it'll take a few more weeks) and he doesn't seem to even notice when I wash the incision in the bathtub. He is crawling around like a WILD MAN and has been pulling himself up wherever he can. I heard from somebody else whose child had the same surgery that her child made major gross motor developments after the surgery. Ryan was already on the verge of sitting unsupported (without timbering after 15 seconds) and was doing his own version of crawling, but after the surgery it was like a switch was turned on. It's not what we expected after laying in a hospital before for three days so we are beyond thrilled. Minus the baby proofing required.

10 days post-op 

Next up:
Testosterone injection #2 on July 24th
Post-op with Dr. Keating on August 5th

Post-Op Day 4: We're Home!

Sorry about the lack of updates! Day 3 was just fine. Being in our own private room was SO nice. We showered and felt like normal people, then got to start catching up on some sleep. Ryan was pretty comfortable even though they took him off the morphine and had him on just Tylenol. The whole day went by quickly and we were shocked when Ryan pulled off his bandages. The results after just a few days were so evident. The night went super smoothly (he slept on my chest for part of the night) other than a minor glitch when he pulled off his heart monitor and the nurses came running in because the alarms went off. Other than that, we all got some good rest in.

He was ready to break free! 

Already the shape of his head is rounder!

Surprisingly happy for having part of his skull removed!

The next morning we were seen by Dr. Keating around 7. He said that Ryan looked great and we could be discharged! He warned us though that the third day is often the hardest in terms of pain. Included in the directions were to wash and bathe his incision daily and to not worry about him bumping his head. Dr. K said that basically, he will hit his head because he's a baby and that we shouldn't be too concerned. We have to schedule an appointment to see him again in a month to check in. It is shocking to feel and see his head now. He has actual soft spots! The top part of the pi is two inches thick and the legs down the back are each an inch thick.

Our hero, Dr. Keating! 

Ryan was so sleepy that the whole ride home he slept, then slept even more when we got home (for about 2 hours). When he got up we were worried because he had a fever of 101.9 and Dr. K said that we should be alarmed if it goes over 101. We called Children's and they said that we may need to go back. We were instructed to keep an eye on his lethargy and fever. We got a little (a lottle) scared when they were having us check for signs of meningitis (seeing if he winced when we pushed his head towards his chest). Thank goodness we got his fever to go down and he seemed content (although super sleepy). He did not want to be put down all day - understandable for what he's been through. His swelling had been going down a lot and was slightly uneven (he slept on his right side so the swelling was pretty bad on that side, making him look fairly lop-sided). We fed him dinner late and gave him a bath then put him in bed with us. There was no way that he was sleeping in his crib alone, we were just too worried for that!

The night was pretty rough. He woke up hysterical every few hours and was hard to console. While I'm sure he was in pain, I think it was also that he was scared that something would happen. From his point of view, the past few nights have been pretty hellish and full of unpleasant surprises. Every time he woke up, somebody was poking or prodding him. And he didn't like it :(

4 Days After

His incision has been cleaned and looks so much better!

Today has been so much better. He got to eat his first solid food since Tuesday and was very happy! We figured out that it was easier to slip his medicine to him through his apple juice and life has been a lot easier since then! He is happily playing with his toys and sitting up nicely. We are working on staying ahead of the pain so that he is comfortable.

Post-Op Day 1: Movin' On Up!

We are 28 hours post-op and doing well! The past few hours have been on the up and we have lots to be happy about. Dr. Keating saw us around 7:30 this morning and said that Ryan looked great. He said that they could remove the drain from his head and approved us moving into a room outside of the PICU. This also meant that he could have his catheter and arterial line removed. He said that this would be super easy and that they would just slide out. But, it was not very easy. They did not just slide out. At all. The catheter removal made him start to fuss, and the arterial line was ROUGH. It was stitched into his wrist so the nurse had to cut the stitches and then slowly pull it out. Poor Mimi and Papa T had to be here to witness it all. It was pretty upsetting because had to be held down as it all happened. After it was removed, we had to apply a lot of pressure to stop the bleeding.

This was the most unhappy we'd seen Ryan pretty much ever. 

After about 10 minutes of screaming and crying, he was calm and happy to lay on our chest.  He slept for almost an hour after it. We were so glad to get to hold him. I can't even articulate the frustration and sadness that we felt just watching him lay there in pain, not able to pick him up or help (I spent a lot of time kneeling on his bed humming and pressing my face against his because it was the only thing that made him semi-content).  During his nap, we learned that his private room opened up on the 5th floor of Children's in the Neuroscience wing.

The room is HUGE and has its own bathroom with a shower. Even better, we have a view of the Washington Monument and will be able to watch the fireworks tonight! A first for all three members of the Johnson Family. 

Ryan got to watch baseball with Daddy!

At this point we were fearing that his eyes were going to be swollen shut.  Fortunately it went down as abruptly as it came and Ryan began showing his bright and happy personality again.

His swelling has been like a rollercoaster - even as I write this blog. Confession - these blog posts take me a LONG time because of all of the interruptions. I would say that could explain the clustercrazy nature of my thoughts but that's pretty much how I always think/write. It can explain the range of developments that I share though. This morning he looked pretty good. Again, not nearly as bad as I expected. His eyes weren't swollen shut and he seemed pretty happy. As the morning went on (and as we moved into our room) he looked much more swollen. He looked like a little boxer but was pretty happy and interested in the move. 

As his bandages get looser (and he starts to tug at them) we are noticing a huge difference. His forehead is already wider. Dr. Keating said that he saw this as he was bandaging his head in the operating room. It's really unbelievable that we can see results so immediately. Good for you, science. 

Now we are settled into our room and feeling great. We had a surprise visitor - one of my students from this year and her mother! They brought Ryan a stuffed animal and balloons and he let out his first "Roonie Scream" out of excitement in days. Now Grammie and Poppie are visiting and he's giggling and playing. It is such a relief. It's like a six-month burden has been lifted off our shoulders and it feels amazing. 

Post-Op: The First Night

I feel like "David after dentist" ... is this real life? It hit me at about 2:30 this morning that I had been awake for 24 hours straight. It also hit me that while my math skills are already pretty disappointing (especially for an Asian ... who teaches math to the next generation), my math skills when I'm tired are embarrassing. So are my memory skills. Thank goodness the nurses and doctors keep track of all the meds going in because I have lost that ability. The coffee and adrenaline had worn off and I was really hoping to get some sleep through the night but it was tough. Around 10:30 after enjoying about 7 ounces of milk, Ryan threw up pretty much everything. We had never seen him throw up the amount that he did and immediately after he just looked so pathetic. Drained and exhausted, he just kept looking at us with his puffy face and sad eyes. Add that to the list of "Things That Make Me Cry" right next to "My Girl" and Sirius Black being killed in book 5. I felt horrible for him and was worried about dehydration and of course the cause of all of this.

The doctors were making their rounds (they travel around in this little pack and all have computers on carts - it's a little funny, especially when you haven't gotten any sleep) and were there at just the right time. They guessed that it was the morphine making him itch (rubbing his eyes non-stop) and maybe also making him throw up. They gave him Zofran for the nausea, then said that for every future morphine dose, they want it to be accompanied with Benadryl. They also started him on Tylenol (administered rectally, poor little fella can't catch a break) and said that if the Zofran and Benadryl don't stop the itching and vomiting, we will have to use something else to manage the pain.

The pain seems to come and go. Sometimes he wakes up and seems perfectly content looking at me while I rub his face and sing to him. Other times he wakes up and is pissed. He throws his legs around and tries to pull out the different cords, then gets further pissed when I tell him that it's not a good idea to pull out different cords that are (literally) stitched into his body.

Right now we are waiting on Dr. Keating to come and check him out and potentially give the go ahead to move out of the PICU and into our own room. It's nice to have such thorough monitoring, but I am definitely ready to be done with the PICU. It was a crazy night with lots of alarms going off and people scurrying around to attend to different kids. I think Ryan took a back seat because he wasn't in immediate danger (understandable) but it was frustrating to be holding my son up after he vomited his own body weight waiting for somebody to help. Other than that, we are hanging in there. All of the nurses here are so kind and caring. I know that when Ryan's in pain, they truly care and want to help him. We definitely made the right choice coming here!

12 hours post-op. There is slight bruising setting in above his right eye, but other than that, he isn't too terribly swollen. 

Post-Op Day 1: 7 Hours Later

Ryan has been in the PICU since 10 am and he's doing pretty well. The swelling has definitely increased some but he remains comfortable in appearance. He has woken up a couple of times - a few of them he just slowly looked around and took everything in. He clearly isn't himself but I don't blame him for acting disoriented ... aside from the morphine, this little man has apparated (nerd alert) multiple places in the 12 hours - he woke up in our bed (sorry I'm not sorry), was shuffled sleepily into the car seat, to the waiting room, to the surgery prep room, operating room, and now in a big hospital bed with a lot of friendly faces - old and new. That's a whole lot of movement for an itty bitty, and might explain why sometimes he wakes up and is pretty upset. 

While I was initially optimistic that his eyes wouldn't swell shut, the nurse said it doesn't look good. Every few hours they check his pupils and she said that his eyes are already getting more and more swollen. Fortunately his oxygen nose-tube thingy is gone. That was one thing that was clearly annoying him and he kept scratching and pulling it out. He has been rubbing his face a lot lately. We think this may be out of habit (he always rubs his face when he's tired and obviously he's very sleepy right now) however we are watching to make sure that it isn't an adverse reaction to the morphine.He's also been constantly kicking off all the blankets, so he's basically just chillin in a diaper (with his cow lovie "Bessie") by his side. We finally got to feed him a little after hours of watching him make that cute fishy-sucking face. Clearly, he was enjoying lots and lots of milk in his dreams. We fed him about an ounce of milk and stopped because we didn't want him to get sick and he was not thrilled about it and made sure it was known. 

Poor guy was inhaling it ...
probably because he hasn't eaten in 15 hours.

He's pretty out of it but still managed to enjoy his favorite TV show, Pocoyo, on the iPad. Those colors and music must be pretttttty trippy to watch while on morphine.  

NEWS FLASHHHHH: Dr. Keating just came in and told us that his vitals look great and he's generating lots of red blood cells. In addition, the blood tube coming out from his head is slowing and starting to clot. He then told the nurses that Ryan is doing SO well that if something happens in the ICU and they need more beds, he can go to a "normal" room tonight! He said that he's the "healthiest kid in the ICU." What whattttt?! Ryan and I fist-pounded over it. 

Post-Op Day 1: We're on the Other Side!

On the road at 5 am!

Ryan had his surgery this morning at 7:30. I woke him up to nurse around 2:30 and we left the house at 5, arriving here at 5:45. Side note, I always complain about the traffic living in the DC area, but having such an amazing doctor and facility so close to our house has been a true blessing. 

They took him back around 6:45 to ask a million of the same questions over and over again. We met his medical team 5-7 doctors would be there during his surgery and then had to hand him over. I was a little disappointed that I wouldn't be able to be with him while he was sedated. They said that policy is that if the babies are under a year old, they don't really need their parents because stranger anxiety hasn't really set in yet. I was a little surprised because stranger anxiety kicks in like crazy around six months. 

Before they took him back. Poor little guy didn't even know what was happening :( This was also before all of the doctors starting coming in wearing their caps (Ryan is terrified of people in hats right now). 

I'm not going to lie (I really don't lie so I don't know why I always preface comments with this) ... that was the hardest thing I've ever had to do in my life. I had decided beforehand that I wouldn't be too upset in front of Ryan because I didn't want him to sense it. The few times that I've cried in front of him he's definitely looked confused. I couldn't find a "good-bye" to suffice ... a kiss didn't seem like enough. Five kisses didn't seem like it'd be enough. We handed him over and the doctor could tell it was difficult for us. "One more kiss" she said :( We moped back to the waiting room and I bawled in my mom's arms.

Dr. Keating said that it would take about an hour to get him in and then his work would take about an hour. He warned us first though that things happen and not to freak out if the time went longer. The cool thing about Children's is that they have a huge screen up where they show the progress of each case. That way we weren't completely clueless to what was happening.

After 15 days 2.5 hours Dr. Keating came out and said that everything went really well. Ryan didn't need a blood transfusion (woohoo). He said that there's a 50/50 chance that he'll need one tonight because he lost about "a quarter tank" (surprisingly, his medical lingo not mine). He also didn't see any of Ryan's brain or a loss of any spinal fluids. After today he will hopefully be moved into his own room. He took us to the PICU to wait to see our baby boy and after about a half hour we got to see him.

When we walked into the room we both just broke down. He didn't look too different, only slightly puffy. Dr. Keating said that because of the position that he was in during surgery (face down with a lot of fluids pressing down), it would be like one of us drinking a ton of beer and eating pizza and then sleeping face down (again, his words). But other than that he looked so peaceful. Since then he's been touch and go. He wakes up and fusses and whines and after about 5 minutes goes back to sleep. He's on morphine to help but they said that the pain medicine isn't necessarily because they know he's in pain ... his nurse said that he has about 100 reasons to be upset but they want to address the one (pain) that they can. He has quite a few lines running out of him right now: oxygen out of his nose, a drain coming from his head filled with a pinkish/reddish fluid, two IVs out of his feet, a catheter, and an arterial line (to take his blood pressure, take blood, etc.). The oxygen tubes will hopefully be out in a little once he's more awake and the other lines will ideally be out tomorrow morning. Ideally he'll be able to drink some breast milk in a little. We are waiting to see if we can get into a private PICU room. His nurse said it likely won't happen because they are completely full, but we'll see! And let's hope because there is a baby in here with us who is NOT happy. And has not been happy for like two hours.

The swelling wasn't nearly as bad as I had prepared myself for. I know that it will certainly get worse as the day goes on though.

If only they had a bigger bed.

My brave little man. My whole heart. <3

Pre-Op Pictures

At his pre-op appointment, Dr. Keating measured Ryan's cephalic index to be 0.65. 

These are all recent pictures of the effects of his sagittal craniosynostosis. 

PS I think he's just about the most adorable baby in the world. 

Okay, THE most adorable baby in the world. The universe. Ever. 

Pre-Op Appointment 7.1.13

This morning we met with Dr. Keating at Children's to prepare for Wednesday's surgery. We had an 11:00 appointment and were seen at 1:30. The man's incredible bedside manner is apparent in that he is almost always running very behind with his appointments. The only thing that kept us patient was knowing that he wouldn't rush us and would answer our long list of questions. And also that we would from now on always get his earliest appointment possible :)

We were first seen by a physician's assistant to get general information on Ryan's health. They of course just want to make sure that he's healthy going into surgery. Other than a minor case of thrush and some eczema, he was cleared. We were also given a consent form that was painful to read. I know they're just trying to cover their legal butts, but making a parent sign off on the possibility of a coma, stroke, etc. etc. DEATH is just cruel. Understandable in this day and age, but cruel nonetheless. Dr. Keating assured us that many of the things written down are incredibly rare ... but I wanted to interject and say "yes, but so is the incidence of a baby having cranio and a hypospadias." But, like I preach, positive thinking.

He explained that on the day of, here's what to expect:

5:30 am: we show up with Ryan. He can't eat solid foods after midnight (I wouldn't call what he eats solid food, but I knew what they meant) but can breastfeed 4 hours before showing up.

7:00: they will take him back to get ready for surgery. We can go with him up until he goes into the operating room. They will use a gas to sedate him and then once he's down, put in the IV, breathing tube, etc. They will come and tell us when he goes into surgery. Dr. K said to not be surprised if it's an hour between when we drop him off and when he actually gets started. He described the procedure again and we were delighted to hear that babies typically only lose about two tablespoons of blood during this procedure and that he can quickly "plug" any bleeding (clearly my own medically-correct term). There is about a 25% chance that he'll need a blood transfusion and in that case it will be on hand. I originally wanted to see if we could get his blood type and then have a family member donate, but he assured us that it was okay and that the blood that Ryan would be getting would likely be screened better than our own and that it would be safe. I asked him if his brain would be touched/seen (I know very little about the anatomy of the skull) and he said that it's very rare that they cut through that far. It would also be rare to see any spinal fluid leak out. But again, he'd be able to plug it up. When it's all done, he will come back and get us, let us know how it all went, then take us to the ICU to see Ryan.

For the first day, he will be kept comfortable with valium and morphine. I was really concerned about this because he's in that active, crawling, grab everything stage of babyhood. I couldn't imagine how he'd handle a bunch of tubes hanging out of his body. He will have his IV, a drainage tube from his head, and a catheter. He said that he will be very mellow.

On the second day, they will "painlessly" remove all of the tubes and he will be more free to move. He wasn't positive on whether or not we'd get to hold him on Wednesday but said Thursday we would be good to go. At this point, they also will likely move us out of the ICU into a private room. He warned us that Ryan would look pretty rough on day two and that the swelling could be pretty bad (even swelling his eyes shut). I read on another blog that there was no purpose in looking at pictures of other kids post-surgery because there's no way to prepare yourself for what your baby will look like. I can't even begin to imagine.

After the first day, Dr. K said that the pain will be able to be managed with Tylonol. Awesome! Because watching your baby in pain and not being able to help is pretty much the worst thing you'll ever have to experience.

If all goes well, he will be discharged on Friday and will have a follow-up in about a month to check on everything.

We left the appointment feeling ready ... not necessarily better about it all ... but ready. We had to take Ryan to get a pre-op blood draw, which made me so thankful for the fact that he won't have to be awake for an IV insertion on Wednesday.

Dr. Keating described the people who draw the blood as "vampires" who do an amazing job and for the most part, he was right. He cried a lot, but it wasn't as bad as we thought it'd be. 

I remember writing the big date on the calendar and thinking it's so far away and yet it's already here. I'm experiencing the biggest mix of emotions - excitement for it to be over and obvious fears of the worst. It's been six long months of this day looming and countless hours have been spent fretting and fearing this day. I've spent a lot of time crying and dreading the moment where they say that they need to take him back to the operating room. For me, this is unfathomable and I don't know how I will be but I don't think it will be pretty. But all we can do is stay positive and hope for the best.

One very bright thing that happened this week was that we got a care package from the Cranio Care Bears. http://craniocarebears.org/ is an organization created by two moms with cranio kids. Their mission is to spread awareness about Cranio and help relieve the stress from families going through it.

Among the care package was goodies for the hospital (for Ryan and us), a checklist of what to pack, and a hat for him to wear after surgery.  They also included a prayer chain to put on his hospital bed filled with encouraging and inspiring quotes. We will definitely be paying it forward to this organization and have considered setting up a collection of donations to send back to them in honor of Ryan's first birthday.

Ryan especially loves these "Click Clack Keys" that they included.

It is the kindness of this organization, our friends, and family that have kept us going. We thank all of you for the continued support throughout this bumpy ride.

Performance Enhancing Drugs

I've been writing a lot about Ryan's cranio, but I realized I haven't shared much about what a hypospadias is. Like I've said in the past, his urethra is slightly below where it should be. When Ryan was born, the pediatrician immediately diagnosed it in the delivery room (and we even had to fill out federal paperwork to document this "deformity"). Because his urethra is low, the doctor will need to "zip it up" so that it is in the correct place. I don't have one of those parts, but I find that using the term "zip" and "penis" together in a thought makes me cringe.

Anyways, he said it's not that complicated of a procedure (it just requires a lot of layers of sutures), but since the parts he's working with are so ... tiny ... it takes a lot of time. In fact, the doctor said that it would take longer than his cranio surgery. We were also very happy to learn that it can be preformed as an outpatient procedure at the Children's Hospital location down the road. One thing that makes us feel better is that supposedly, this isn't any more painful than a routine circumcision. I'm not clear at all on how they can say this (I doubt any newborn can report out circumcision and/or hypospadias correction surgery using a pain scale) but apparently there is some type of method. And it is assuring to hear. On a side note - Dr. Keating told us that this surgery would likely be more painful than his cranio surgery.

So apparently it looks like this on the pain scale:

Circumcision > Hypospadias surgery > Cranio surgery  (I know ... it's counterintuitive to me as well).

Like his cranio surgery, there is a chance that he will have to get it repaired later in life. We would know this because he would leak. Not ideal. The whole reason why we're getting the surgery done is because if we don't, he likely won't be able to pee standing and could have intimacy problems down the road. However with the surgery, the doctor said that more than likely, only a urologist would be able to detect that he had it done. So as Matt puts it, Ryan shouldn't date urology students in college.

I really didn't want to shock you all with an actual picture. Or distribute kiddie porn. But peenie number 1 best resembles Ryan's situation. We read that in less-developed countries, boys born with this condition (specifically #4) are raised as females (after a little - okay a big - snip snip).

We scheduled Ryan's two testosterone injections for his hypospadias surgery. As the urologist put it, he's working with very delicate and teeny parts. Getting injections in the time leading up to the surgery will give him a little more to work with. He will get the first on June 21st and the second on July 24th. The doctor assured us that there wouldn't be any long-lasting effects (although my husband did embarrassingly ask if Ryan would be ... bigger ... for life). He said that Ryan would have a spike in growth but would plateau out and then progress and grow normally after.

As the school year comes to a close (and our little man grows bigger), the big day is getting closer. We are feeling increasingly more comfortable with it all, but it's definitely looming. It's a strange mix of emotions. We're obviously scared out of our new parent minds. We're anxious about how it's going to go ... how we'll be on the day of. We're eager to get it over with. And in the mean time, we are loving up on this little man and staying positive.

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.