Theodore's Craniosynostosis Surgery

This is probably going to be pretty dang hard for me to write out but I think it might be a little therapeutic for me too. Honestly, I think I have some PTSD from this experience--it was the hardest thing I have ever had to do and we are just so relieved that his surgery is over! Theodore is just a freaking warrior!!!!!

We knew that Teddy may have craniosynostosis from the time he was 1 day old. The pediatrician at the hospital noticed he had a bumpy ridge going along the center of his head and told us it could be overlapping plates from delivery or that his plates could be fused together. My niece Evie has cranio so I was somewhat familiar with it and knew that most likely it wasn't just overlapping plates. When we went to his 4 day appointment with his pediatrician, he confirmed that not only did he have a bumpy ridge but the shape of his head wasn't quite right. I left that appointment in tears because even though it still wasn't confirmed, I knew he had it. We got in touch with Primary Children's hospital that day and I sent pictures to the nurse to consult with the surgeons.

I started researching like crazy, found videos, articles, and even a Facebook group that has been extremely helpful. I learned that if craniosynostosis is caught early enough, there is a new less invasive procedure that can be performed. I was SOOO happy when I learned about the endoscopic surgery because obviously having a less invasive surgery is always better. The more invasive surgery is called cranial vault reconstruction (CVR) and the babies have a scar from ear to ear, have a 5 day stay in the hospital, and most likely need a blood transfusion. They literally peel the skin back from the skull and reconstruct it right then and there, so it's a very intense surgery. With the endoscopic surgery, the baby just gets two small incisions and a strip of skull is removed and only has a one night stay in the hospital. Then the baby wears a helmet for about 6 months to reshape the skull and the skull eventually fills in where it was removed. Both of these surgeries allow the brain to grow in the right shape and without it, there is risk for inter-cranial pressure leading to brain damage and then obviously a funky looking head.

After we sent the first set of pictures to the nurse they told us that based on his head shape they weren't too concerned yet. I tried to put it out of my mind and then just before Christmas I sent more pictures of Teddy's head. At this point you could definitely tell the shape of his head had gotten worse and it was going more pointy in the back. The nurse text me back and told me they would like to see Teddy before the end of the month, so at this point we knew for sure they were worried and he most likely had craniosynostosis.

We met with the neurosurgeon, Dr, Kestle, on New Year's Eve and he confirmed that Teddy has sagittal craniosynostosis. Even though we were 99% sure he had it, it was still very hard to hear. The next month leading up to his surgery was the absolute worst. I fell into a pretty bad depression and was constantly crying and filled with so much anxiety. I really didn't cope well and looking back now it just feels like a fog. I tried to enjoy and soak up all the newborn cuddles, but in the back of my mind was always the upcoming surgery. It completely weighed me down.

Exactly one month after our official diagnosis we were back at Primary Children's for Teddy's CT scan. I had been soooo anxious for his CT scan because I was told he'd have to be asleep for it. I initially thought this meant he'd be under anesthesia and was NOT happy about that but then I was told he would just need to be sedated. Then the day before they called me and told me he didn't need to be sedated because the scan only took a minute! I was sooo happy because I didn't want him to have to fast and be there for hours for the sedation to wear off. He was SOOO brave for the CT scan and even though he didn't love his head being constrained, he sat still enough for them to get a good image. I got to stay in the room with him while Landon and Charlie waited outside. It was seriously the cutest little pirate-themed CT scan and after it was done we asked the techs if we could see the images. He has the cutest little skull and I was DYING over his little binky in the images. It was also such a relief that only his sagittal suture was fused, just as we thought. We were just worried that another suture could be fused and suddenly make the surgery more complicated or make him not as good of a candidate for the less invasive procedure. We left the hospital feeling so relieved!

You can see his fusion here

The week before his surgery, Teddy also got his package from Cranio Care Bears. This is a non-profit organization started by two moms whose babies had craniosynostosis and they wanted to help other moms and kids as they approach their surgeries. It really meant so much to us to receive the package and I swear Teddy could tell it was something special for him because when I laid him by it he was SO happy!

The next week was basically hell. Each day leading up to the surgery just felt worse and worse. I was a nervous, anxious, emotional mess. On Tuesday we had our appointment with Dr. Siddiqi, the plastic surgeon. We hadn't been able to meet him until then because he was out for a month because he had surgery himself. We were so excited to meet him because he is the same doctor that performed surgery on my niece and we had heard such great things about him from other friends too. He was so nice and answered some of our last minute questions and then sent us down to get labs. Teddy was SOOO brave for getting his blood drawn I can't even handle it. He cried a little bit when they put it in and then just laid their calmly until they pulled it out and then soothed instantly when I picked him up.

I also forgot to mention that Charlie woke up with a fever Tuesday morning...two days before Teddy's surgery. I don't even know how he got sick because we were pretty much on a quarantine. We took him to Teddy's appointments with us and we went ice skating to an outdoor rink Saturday but it just doesn't make sense that he got sick. The poor kid just wanted to snuggle me and I really tried to avoid contact with him as much as possible. :( It was soooo heartbreaking and I felt so bad for my little boy!

The day before the surgery was so rough. I found out at our appointment two days before his surgery that we were supposed to go to the helmet clinic for a scan of his head pre-surgery. It would've been good to know that sooner because I definitely didn't need the added stress of going all the way back to Salt Lake the day before his surgery... But we made it work and he looked so cute in his little bonnet that they put on him to scan his head.

I was trying so hard to be brave and hold it together the rest of that day, but they called to postpone his surgery TWICE. I seriously lost it. They called me at 8:30 am and told me his surgery was scheduled for 9 and to be there at 7:30 with no food after 3:30 am. Then a few hours later they called and told me we were pushed to noon with a 10:30 arrival time and no food after 6:30 am. Then at 5 pm they called me and told me his surgery was pushed to 3pm with an arrival of 1:30 and no food after 9:30 am! I LOST it! I seriously haven't cried that hard in a long time. Not only would my sweet boy be getting his head cut open the next day, but he would have to fast ALLLL day long from 9:30-3?! YEAH RIGHT!!!!! I was soooo upset. The morning time slots were so much better because he sleeps through the night and is used to going all night without eating. But to not eat all day?! There's just no way. I didn't know if we should just postpone, especially because I was terrified Teddy was going to catch Charlie's sickness and then dealing with fasting all day... I ended up just snuggling my little boy and crying most of the night. It was just awful. My sweet neighbor and good friend Aleena text me that night asking if I needed anything at all and I asked her if she would be willing to pick up some pedialyte, since Teddy could have that a few hours after his fast from breastmilk. She is seriously the best and brought over not only pedialyte but Nerds for me, dark chocolate for Landon, and a make-your-own-candy kit for Charlie. It meant so much to us for her to be so thoughtful and sweet at such a stressful moment!

I also took some pictures of his cute little pointy head because I knew I was going to miss it. I was also so sad to say goodbye to his adorable dinosaur ridge. Sweet boy.

I didn't sleep much that night and woke up early thinking to myself, "how on earth am I going to make it through today?" It was 7:45 am and I got Teddy out of his bassinet and started nursing him, but he was mostly sleeping. I just needed some snuggles. It would have been so much better not only for Teddy and his eating but for my emotions to just get the surgery done first thing. We wanted it to be over SOOOO bad. Well at 8:15 I got a call from the hospital asking if we could be in at 9 am! It was snowing and even if we had been ready to leave right then, we couldn't be there by 9 but I told them I could be there by 10. Holy cow, I have never had to move so fast in my entire life! I hadn't finished packing, hadn't brushed my teeth, hadn't dropped Charlie off yet, hadn't really fed Teddy so I needed to pump... It was an INSANE morning! I seriously was running around the house like a chicken with my head cut off. It was actually a good thing I was so busy because I really didn't even have time to worry about the surgery itself, I was just focused on getting us all out the door. Even though Teddy hadn't eaten, he was just remarkably calm laying on my bed while I ran around. The craziest part of all is that Landon had to go to work that morning! Since we didn't need to be to the hospital until 1:30, Landon scheduled an interview for a position at work from 9-9:30!!! So he headed to work and I headed to Suzette's to drop off Charlie and then we drove separately to the hospital. Have I mentioned that driving in the snow is one of my worst fears?! Again, maybe it's a good thing it was snowing because I was so nervous and focused on the snow, that I was able to hold it together and not really think too much about the surgery.

I got to the hospital at 10 but it took 20 minutes to find a parking spot so Landon and I ended up being able to walk up together, which I was grateful for. After they got us checked in, we had 15 min or so to wait until they called us back to pre-op. Dr. Kestle came to see us in the waiting area and I grabbed a quick picture. Look at how well I was doing at holding it together! :)

They got us back into pre-op pretty quickly and then it was a blur of multiple nurses and doctors and residents coming to check on Teddy to make sure he was good and healthy for the surgery and also to explain how things would go. I changed Teddy into his little hospital gown and just about died over how cute he was. He was soooo miraculously calm throughout pre-op considering it was now past 10:30 am and he hadn't eaten yet. He was flirting with the nurses and smiling and cooing and just being so cute. It was so heartbreaking for me because he was just being so sweet and he had no idea what was coming next for him.

Pre-op was pretty quick and before we knew it the anesthesiologist told us it was time to take him back. I was pretty strong in pre-op up until this point... but I just felt so sick to my stomach with tears in my eyes as we walked through the halls. When it was time for the actual hand off I gave him to the resident anesthesiologist and then sobbed in Landon's arms. It was the HARDEST thing to hand my baby off to a complete stranger and know that they were about to cut out part of his skull. It really was just too much to deal with. I'll never forget that moment as we cried and held each other. It was so awful. The hand off was at 11:15 am and Landon started a timer on his phone so we could know exactly how long it had been. We were told it would be about 2 hours, which feels like an eternity when your tiny baby is in surgery.

We went to check in at the waiting room with the receptionist to tell her that we would be leaving for a bit. The waiting room was just so yucky. The lights are so bright and the tension in the room is just awful... So we gave our name and number to the cutest receptionist in case they needed to get a hold of us and headed to the Ronald McDonald House. I love that Primary Children's has this room for patients and families. It's sooo nice with such a beautiful view and just feels so homey. It is stocked with food too so we ate a Hot Pocket and some Lucky Charms while we waited. In the craziness of the morning I totally forgot to eat, so even though I didn't feel hungry at all, I knew I needed to eat. I was also able to pump in there which was so much more comfortable.

After about an hour in the Ronald McDonald house we headed back down to the waiting room. I tried to keep myself distracted by watching The Bachelor and keeping friends/family updated but honestly I was just in a fog. It was so surreal and just sickening. Time was dragging on too! At 1pm we FINALLY saw the surgeons and Landon jumped up excitedly to see them. When I stood up I literally thought I was going to pass out because the surgeons just looked straight faced and I was expecting/hoping to see them smiling. I thought something may have gone wrong and I really almost fell over. I think Dr. Siddiqi could tell I wasn't feeling great by the look on my face so he quickly said, "everything went great! He's great!" I finally felt like I could breathe at that point. They pulled us into a room and told us that the surgery went well and that we would get to see Teddy in about 30 minutes.

The next 30 minutes seemed to drag on as well but we finally got the call that we could head back to recovery to see him. I had tried to prepare for this moment because everyone told me it is really shocking to see your kid after surgery but there's just nothing that can prepare you... When I saw him I couldn't stop the tears. He was screaming and looked soooo pale. Like green or gray and just not even alive. It was so hard to see my baby like that and I really didn't handle it well. I had the nurse hand him to me and then continued to cry as he screamed. He was inconsolable and it was heartbreaking. I tried to give him his binky, some pedialyte, and even some pumped milk that I had left for him... He was just so upset and confused and it was the worst....

Pictures really don't do justice to how pale and sickly he looked. :(

When it was time to go back to our room they had me put him back in his crib to wheel him over there... He had somewhat calmed down at this point but then when I had to lay him back down he was soooo upset. It felt like the longest walk EVER to get to our room because he was just hysterical.

When we finally got back to our room I had the nurse hand him to me again as I tried to comfort him. He took awhile to settle and then would wake up every 5 minutes screaming. It was so awful to watch my sweet baby in so much pain. When he would scream his heart rate would get to 215. It was scary! Landon had to go back to work for an hour or so because they were interviewing someone for their team so my cute parents came up. I'm so glad they were there because there was no way I would have been able to pump, go to the bathroom, etc. without my mom there holding Teddy. He was just so upset even when he was being held so there's no way I could've set him down in his crib. At this point he had some morphine, oxy, and tylenol but he was still just so sad. He ate about 2 oz of milk but really didn't want much to do with it.

At one point the nurse came up and clipped an oxygen max near his face because his oxygen stats were dropping, which she said is normal when babies are coming out of anesthesia but of course it was freaking me out.

When the nurse was checking his vitals she noticed that the IV in his hand had fallen out which was a bummer, but he still had the IV in his foot. They tried to use his IV to get blood for his labs but it wasn't working so poor Teddy had to be poked for labs. He was hysterical again and it was just awful. I felt so bad for him. About an hour later when the nurse was changing his diaper, the other IV in his foot fell out. There was blood everywhere and it got all over his special blanket. I was sooo upset because I knew this would mean he would probably need another IV for fluids or if we wanted him to have any additional morphine. We decided to hold off on putting another IV in for now to see if he would be okay without morphine and to see if we could get him to eat so he wouldn't need fluid.

Well, about an hour later Teddy wouldn't take his bottle so we knew he would need to get the IV. He was also pretty fussy and we decided more morphine was probably needed. It's so hard to know what to do because you definitely don't want to give him too much medicine but you also don't want your sweet baby to be in pain. At this point we had to move rooms and I was so mad because he HATED  being in that crib so it completely upset him to be wheeled down the halls again, and he was definitely past due for his morphine at this point.

When we got to our room we were introduced to our new nurse, Barb. Oh my gosh I loved her so much. She just had that grandmother-nurturing love towards Teddy and was just so sweet with him. Not that the other nurses weren't sweet, she was just extra loving. I wish I would've gotten a picture with her.

The IV team finally got to our room around 8:00pm and I was so nervous for my poor baby who was already in pain to now have to deal with getting poked. Cute Barb had the morphine ready to go so that once the IV was placed she could give it to him right away. Unfortunately, the IV team couldn't get the IV to go in until the FOURTH time. My poor, sweet baby was so upset as he was poked over and over. Barb gave us "sweeties" (sugar water) that helped him a little bit but it was just so awful to see him screaming and so upset. Getting an IV hurts and he had to do it FOUR times. I'm still so upset that it happened... I asked the techs if they could please do whatever they could to keep the IV in place so it wouldn't fall out again and they put a board under his arm and then a sock over the IV. I don't know why they couldn't have done that from the start but luckily the IV stayed in his arm!

After that fiasco Teddy got his morphine and then for the first time since his surgery, he fell soundly asleep! It was such a relief to finally see him comfortable and asleep instead of waking up screaming every few minutes. We left him in his crib because we didn't want to disturb him and he slept for hours! While he was sleeping Daren and Liliana came to visit and brought us some dinner. It felt so good to finally eat and to feel like we could relax since our baby was doing a lot better.

Finally got his cozy blanket back from the laundry after it got blood all over it.

We all ended up sleeping until about 5 am and then Teddy finally had a full bottle! He was feeling SOOO much better! We were then able to go back to sleep until 7 am and he had another bottle. I was still so nervous to nurse him so I just pumped and bottle fed. He was still a little fussy but nothing compared to the horrors of the day before. By noon he SMILED at us for the first time and I can't even tell you how happy and relieved we felt to see our sweet boy happy! I started crying but this time it was happy tears!! It was just such relief to see him awake and content.

The cutest little sensors with animals on them.

The rest of the day was just so relaxing and full of cuddles and rest. By 1pm the nurses told us they were just waiting for the all clear from the doctors to get discharged as long as we were feeling up for going home. I told the nurses that I wasn't ready to go home but that I wouldn't feel ready the next day either. I was just filled with soooooo much anxiety about leaving the hospital and having complications.

His little head was so swollen :(

We got the most beautiful flowers from our friends Jen and Dave  

His sweet little tylenol-face :)

We were discharged at 2pm after they went through all the discharge instructions with us and I was seriously sick to my stomach about leaving... It was just so weird to leave the hospital! We picked Charlie up from Nini and Papa's and then when we got home I nursed Teddy for the first time and my anxiety started to ease. It really was sooooo much better to be home!! Teddy was seriously acting like his normal self at this point so it really was just nice to be home together and not be in the sterile, uncomfortable hospital environment.

He was a little swollen for the first few days but by a week post op it was down. His head was just soooo funky shaped at first. And depending on which way he was laying, the opposite side would be bulging out. It was kind of freaky. The other thing that has been freaky for us is his HUGE soft spot now (from his incision to incision). I've basically only put him in clothes that I don't have to pull over his head and I put his onesies on him from his feet up. I am also really nervous and aware around Charlie so that he doesn't accidentally throw a toy at his head or something. 

Teddy has seriously been doing sooooo well since that first day. His incision is basically all the way healed, his head shape has already changed drastically, and he's just so happy and content. I swear he's even happier than he was before the surgery (I'm convinced he had some kind of pressure or headache from the fusion). We are just so glad that the nightmare of his surgery is behind us and that everything went so smoothly.

This whole experience has completely rocked my world. I am honestly shaking as I am typing this blog just because reliving the experience is a little traumatic for me. I know I'll be happy to have all these details documented but it just wasn't fun to think about it all again. There's just nothing that can prepare you for having a brand new baby that needs a major surgery and to see them so pale and in pain and connected to all the machines.... I don't think I would've made it through this experience without my sweet Landon, our parents, family, neighbors, friends, and even strangers on the internet. It's been the hardest thing I've ever been through and I just can't thank everyone enough for the love and support and prayers and well wishes. We had so many people calling and texting to check on us and check on Teddy and we are just so grateful!! We could feel the love and it helped me soooo much!

We are also so grateful for Nini and Papa watching Charlie so we had one less thing to worry about while we were at the hospital with Teddy. I felt bad because I knew Suzette and Jason would have loved to been able to visit Teddy at the hospital but we really needed them with Charlie so I just appreciate them so much!

Skyping with our sweet boy

He gets his helmet on the 25th and I'm feeling pretty anxious about how he'll adjust to it. I've heard it can take a week for them to get used to it, which feels like an eternity if you're dealing with a fussy, sad baby... So hopefully it's not as bad as I'm picturing. He's going to look so cute in a helmet but I'm also going to miss snuggling his sweet little head! It will feel like I'm snuggling and nursing a bowling ball. :( Hopefully he doesn't have to be in it too long, especially since his head shape has already improved SO much.

We are so proud of you, sweet Teddy Jack. You completely rocked your surgery and you are such a brave, strong, sweet baby! We love you so much!