A Few Years Later

I wanted to give an update on how Ryan is/looks now that he is three years old! We now have a second son, Luke, who will be one next week. We all celebrated when I delivered him and immediately checked to see that he had a soft spot (woohoo, no surgeries for this one)! Ryan had his annual check-up with Dr. Keating in August and we were once again told that everything is going great. He continues to grow a huge mop of hair that often covers his scar. He's just started noticing that he even has a scar from ear-to-ear and he loves it. We call it his "brave mark" and tell him to touch it whenever he is feeling like he needs some courage to get through a tough situation. Other than that scar, you'd have to look very hard to see any other effects from his cranio. He still has a slight knot on the back of his head when you feel for it, but his forehead looks pretty normal to me! Developmentally, I have no concerns whatsoever. Ryan has mastered his ABCs and even some letter sounds! He has an excellent memory and is super sharp, jumping into all kinds of conversations.

A nature lover just like my biology teaching Dad wants!

Our future Terp!

Loving up on "Baby Luke" 

I've gotten to meet some awesome moms through this blog who had children going through the same thing. If you're reading this because your child has cranio, please reach out to me! I am more than happy to talk to you about our experience and what you might be able to expect.

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.