Im Afraid of the Dark.

There it’s out there now. I am the almost 25 yr old with a child of my own, who is afraid of the dark. Full out, there must be monsters in the shadows, scared. So that’s why with Brandon away for the night, I settled in with a new box of vanilla coke zero some deep ridge BBQ chips and my computer. Unstoppable! Until I had to turn the tv and lights off. But I am admitting it, I’m a baby. Before Sawyer I would have barricaded myself into the master bedroom, but those days are gone. And you would think the dogs would help, but Walle barks at anything, he’s woken Sawyer up 3 times tonight! And Karma is more afraid of her own shadow than I am!

So here I will stay, all night on pinterest. And I will regret it in the morning. But Brandon will be back before tomorrow night so that’s just fine. Here it is in writing, just another reason I can’t live without you Brandon. O and I love and miss you too ūüėČ

can’t wait until there is another little guy that will join my fear of everything, or maybe he’ll be like his Daddy and have no fear. I don’t know which one will be worse!

Follow up appt. with Neurosurgeon

Hello everyone!

This is the first time I’ve been behind on the blog in awhile. So sorry for not updating those of you not hooked up in other places. We had our follow up appointment with our Neurosurgeon on Wednesday. She was out of town, so we saw her assistant. Who I adore. She is in ped’s neurosurgery for a reason. Sawyer wore his special “My first haircut was by a Neurosurgeon” onesie, I had custom made for him along with the “chicks dig scars” one. She thought it was so cute that she took a picture of him in it to show her surgeon friends. He even gave her a smile for it! Which is special because Sawyer has shown some trust issues since our stay in the PICU. He is very weary of new people and even people we are close with. Poor Uncle Matt got a cold reception the first time seeing him after surgery.

The good thing from the appointment is that we are on track. She showed a bit more concern over his ridge on the back of his head. Which I was happy to see. She felt it, made sure there was no fluid build up, and made note of it to watch for our next appointment in one month. All in all things are getting back to normal. Or as normal as can be.

They hoped to have Sawyer off all medication by this point. But that is not flying for him. He cries a lot more than before. And his cry has changed. It almost sounds like he feels so betrayed by you. For putting him down for a nap, or missing a nap, or not feeding him before I know he’s hungry. It’s very sad to listen to. ¬†So we are still slightly relying on children’s advil and tylenol. Sawyer will not be fully recovered for a year. It takes one month for the incision to heal, the stitches are already beginning to dissolve. The plates and screws will take a full year to dissolve. But he’s doing better each day, just what is to be expected 2 weeks post-op. for such an invasive surgery.

We’ve been enjoying our time with GB staying with us, and lots of cousin time. His oldest cousin Tate has been so amazing with him. Such a caring little boy. I am so happy he is getting to grow up with cousins and family around. On that note, I have to dash, we’re having a big family BBQ night here at the house. Followed by movie night. Great way to send off GB, and then its just me and Brandon again. But we’ve made it this far and we know you are all still behind us. Always thankful for all of you, and everything you do!

Follow Up Appt. with Plastic Surgeon.

Today was our follow up appointment with our plastic surgeon. As always he had us in and out in record time. But we got a couple more questions in this time. The big one being: what happened to the back of his head?

There is a raised ridge on the back of his skull. We didn’t notice this until discharge day when we were finally able to pick him up off the bed. There is also a slight rug burn on it as well, just from friction. It feels like bone and that’s what I assumed it was. Today however we found out it’s a plate. Sawyer’s surgery involves a lot of¬†dissolvable¬†plates and screws. To hold together the newly shaped skull. Apparently while in the PICU, the plate was shifted down while laying on his back all week.

I am 1. a little upset there wasn’t some proactive solution to this. I was never told in the PICU that he should be moved more to avoid this problem. In fact, they barely let me shift him around at all.

2. I asked if this was a normal and was answered that it isn’t uncommon. Which didn’t completely answer me at all. When Sawyer is put on his back he cries out in pain. He never did this before and I am worried this is causing¬†unnecessary¬†pain.

{Before and after Top view. Not as narrow, or long anymore. Also missing hair ūüôĀ }

We do have a second follow up appointment with the pediatric plastic surgeon in one month. Once the swelling is completely down and we can see his recovery a bit better. At that point it should be more obvious if this is going to be a problem. Until then we will keep and eye on it. And I will bring it up a second time at our pediatric neurosurgeon’s appointment, which is on Wednesday. That will be the last appointment with her, but I will see the plastic surgeon in one month and then once a year for 5 years.

{Before and after of front view, The head is not as narrow, much more rounded on the top.}

Just going to keep throwing out the thank you’s, I am so touched every time we receive a cards in the mail, a package, gift cards, messages, toys for Sawyer, treats for us. Its amazing how many people have reached out to tell us in so many ways, that they are thinking of us. Thank you everyone who is still following our story. Means the world to our little family!

Happy Fathers Day.

To my husband who has only been a father for 8 months. Who I’ve seen grown in so many ways. He has given me the greatest gift, {your all thinking the baby,} but I was thinking the letting me sleep in some mornings while he feeds Sawyer. ūüėČ For Being a wonderful father. I can’t wait to see the two of you grow together, playing baseball, watching baseball, yelling at baseball. Already in this short time you have made me smile so many times watching the two of you. Just because how easy it is for you to bring a smile to Sawyer’s face too. For every little thing you do. Happy Fathers Day.

To my own dad. Who became a father 24 years ago. And put his whole heart and soul into it. I don’t know another dad quite as special. All my friends openly said they wished you were their dad too. You made every Saturday its own adventure. Bike riding to the ends of the earth for ice cream slurpees. Star wars marathons while mom and Kimmy were out of the house. Valve cover racing in the winter, annual rod runs in the summer. Cheerleading trips that all the moms and just you chaperoned. {maybe you were the lucky one in that haha} For always answering each and every why? For all the long distance calls and video chats. And now this new chapter with Sawyer.I cant wait to see him grow up with you as his GRAND father. For everything from the first day, to now. And especially for all the little in betweens. Happy Fathers Day.

For my Grandpa. There is still not a day that goes by that feels different because your not here. You will never know how much you are missed. At every family gathering, with no one to wear a napkin hat. No one to bring a rubber chicken to the Christmas gift exchange. No one to spot the loonie bird. To always stop at garage sales. To take us to the Big Moo every summer. To always ask if our boyfriends were rich and good looking, but of course not as good looking as him. To always win the beauty contest in Monopoly. To spit in the yahtzee cup. I wish Sawyer could have met the most amazing Crazy Grandpa anyone could have. Our lives are so different now, not because you are gone, but because you were a part of them. For giving us bright happy memories until the last moment. Happy Fathers Day.

For everyone else we cherish and love. Who is spending today with their family. Hug them and tell them how much they mean to you. Never let an “I love you” go unheard. Happy Fathers day everyone.

Pineapple Sunflower Cupcakes.

This is my first post-operation blog post, that isn’t about Sawyer or the surgery. So I hope all my new readers decide to stick around for the happy stuff too! We are still dealing with Sawyers recovery, but there is less drastic changes each day. He is still swollen but not enough for strangers to notice anymore. Still a little bruising under his eyes, and of course the no hair thing which throws me the most. But today we are getting a visit from some friends from Calgary, and going to a big family BBQ. So its too much of a happy day already to be talking about cranio stuff!

So lets move on to the good stuff! I haven’t talked cupcakes for 2 weeks now. Unheard of in my house. In fact this is the first time in a very long time that I haven’t brought cupcakes with me to the family gathering. Which is nice that I don’t have to make anything this first weekend home, but I feel so lost with not bringing something. So instead I’m just going to share some that I made a couple weeks ago for a friends birthday!

Pineapple Sunflower Cupcakes! Chocolate cake with vanilla buttercream frosting and a pineapple sunflower to top each one! I love the way they turned out. Here is a breakdown of how to make the pineapple sunflowers.

Clockwise from top left.

1. Cut the outside off the pineapple. {Can you tell I hate pinapple, I don’t know if the outside has a special name or if there is a term like peeling for it. I despised the smell of my hands for the rest of the day.} Remove the eyes.

2. This is the hard part. You need to slice the pineapple extremely thin. Most of mine were too thick, or it would only slice it in half. So a lot of my pineapple flowers were wasted. I need to find a better way of doing it next time.

3. Bake at 250 until edges slightly curl and start to turn brown. Flip and repeat on the other side. I burnt a lot of mine because for some reason I knew it was 250 but set my oven to 350. So mine were very dark and even burnt. I didn’t realize my mistake until my last batch. So I only got a few usable ones.

4. These are going to be very wet even after baking, so you want to make them at least 1 day ahead of presentation. After baking, lay the pineapple in cupcake trays and let dry overnight.

Then ice your cupcakes as usual. I wanted mine to be a simple black and white look to them, so I did a chocolate cake with vanilla buttercream frosting. Then I pressed the dried pineapple flowers onto select cupcakes. These were a big hit at the little birthday gathering. I am excited to try them again, with all the kinks worked out. And now you can too!

Enjoy.

Smile

After all the feelings I shared yesterday, this was all I needed. I’m still struggling with his change in¬†appearance and his being in pain still. But it gets easier and better each day, because of moments like this.

I’ve never seen a brighter smile. {It’s my kid, I’m allowed to be biased.} It melts my heart that already a week later he doesn’t remember, and he already looks this amazing. I would have never dreamed this possible. A smile this big on recovery day 9. My little man is here again.

From the heart.

I have been strong, for Sawyer. But there are days where I am not. We made it through the surgery with a limited number of tears. I would have never dreamed so little to be possible. But your body works in mysterious ways. Since getting home, I have almost found it to be harder than our 6 days in the PICU. I have felt a rush of emotions at the oddest of times since returning home. Things that I am sure I was pushing back during the recovery time. But now that we are out of danger to most risks, I have time to think about stupid little things. I feel like we were rushed out of the hospital the day of the discharge. The first time I felt so lost in every decision I made. I didn’t know how he should be sleeping or where. If I could resume feeding him solids right away. What to do when he threw up all his medicine and more. There were so many questions I had. Thankfully most have been answered by my sister-in-laws friend, a PICU nurse at another hospital here in town. (Thank you Kelly, you have eased my mind more than you know. And everything you suggested worked like magic!)

What I have found to be the hardest, I would have never thought of. I am feeling detached to Sawyer, because he does not look like “my” Sawyer. Of course they did not change his features, and more and more each day I see his personality shine through. And I know he is still swollen and won’t go down for another month. I know this all, and still I am just feeling like I’ve lost my little baby and its my fault that he’s changed. I know I am insane in thinking it, and then I add some guilt on top of it just for thinking it. I still love him, and when he smiles I am so proud of how far he’s come in just one short week. But I am being honest tonight and that is my biggest struggle so far.

So now you know,¬†I’m human, and not some super mom you’ve all made me out to be. I very much appreciate all the kind encouragement through this whole process. And for the most part I surprised even myself. But I think in the PICU you HAVE to be strong. I did not see another parent in there crying. And I talked to 3 personally. You do it for your kid. But now that we are home, I am allowing feelings in. Its a good thing to have those breaking moments. To cry in the grocery store parking lot. (I wonder what those people parking beside me thought!) Because the human heart can only take so much. So thank you for continuing to lift my spirit. I am still being reached out to by so many people. I would never have thought that anyone beside my husband, dad and aunt read my blog. That alone means so much. (I hope I can continue to keep your attention after this ordeal is over!)

Tomorrow morning my mom leaves and we end just another chapter in this story. Its going to be hard to see her leave. It’s¬†been a huge weight off my shoulder having her help around the house. Even going out together shopping like a regular visit day was just what I needed today. But life goes on and she must go home without us. But then we are lucky because Sawyers GB is coming on the 18th! It will be so nice to see Brandon enjoy the time with his Mom and Sawyer together, like I have enjoyed with my Mom. I am excited to see how he continues to amaze us each day with his smiles and giggles. His new love of books and his growing curiosity. (although the new toy today seems to be scaring the beegeezus out of him!)

And lastly I just want to say I can’t seem to keep up with the thank you’s. I have been literally left¬†speechless¬†over the¬†generosity¬†shown to Sawyer and our family. The flowers, edible arrangements and gift cards for Brandon and I. The toys and books for Sawyer. Each time we receive something, I find it amazing how many people are¬†brightening¬†our days in so many ways. We’ve had so many care packages through the hospital stay and since coming home. Friends and family bringing dinners over. Especially the softy newborn hats Sawyer had custom made for him! I am just loving him in them since he has no hair! I¬†truly¬†am so thankful for everything. You reached out when you didn’t have to, and its very appreciated.

Well this was yet another late night update. I am sure there is spelling errors, grammar errors,¬†sentences¬†that just plainly don’t make sense. Some rambling, some jumping to all different topics. But your getting the real story. I am writing this from my heart. I’ve never promised perfection but I am sharing my story. Thanks for sticking through it.

Recovery Day 5 & 6

We were discharged Monday morning. Much to my pleading eyes of ” let me stay another week. I know most people can’t wait to get out of hospitals. Maybe I am weird. I remember thinking the same thing about my Csection. How can they preform such intense operations and send you home a couple days later. Though I know sawyer has made leaps and bounds in the last 24 hours, I still don’t want to be this far away from the hospital should something go wrong.

It was just Sawyer and I that morning when he opened his eyes as much as possible. He registered that yes I had been by his side this whole time. That smile will be in my heart forever. Daddy got the same bright welcome when he walked in the door. It was like we finally had Sawyer back. I think he was excited to finally open his eyes that he didn’t want to nap. Maybe he thought if he closed those baby blues they would be shut for 5 days again.

Our discharge nurse was the same nurse we had on surgery day. She was such a sweet heart. She got Sawyer all fixed up in the pediatric wings wagon, so while she was doing all our paper work, I could take sawyer on a stroll through PICU. Sawyer was enjoying it but it was again a humbling walk. I was taking my baby without any lines or monitors on a discharge walk and many of those patients are not leaving for a long time. Usually there is only one cranio case per 3 weeks. But there was an emergency operation brought in 2 days after we arrived. This little boy was 4 years old, and no one had caught his till he was feeling effects from it. I got the chance to talk to his Dad in the waiting room, and saw his mom around the hospital a couple times. Another strong family. I thought it was adorable seeing his teachers visiting him. On our last round in the wagon, I stopped by to leave a note for them, some magazines, and the roll of quarters for the vending machines that I had been gifted. Just a little something to say, we know what your going through. His mom wasn’t there but his Grandma was. She gave me a huge thank you and it was the first time I teared up after the surgery.

And then we were on our way. Going home for the first time in almost a week. Our great nurse walked us all the way to our car, two floors down in the parking garage. Sawyer even gave her a big hug as she picked him up and put him in his car seat. It felt so weird to be leaving so soon. But after one more hug from me, she bid us farewell and away we went. It was so wonderful to see Sawyer recognize being home. When knew he loved Karma before, but it really showed when Sawyer lit up and giggled uncontrollably for the first time since the surgery, after karma jumped up to see him. {bonus points for getting it on video camera.}

He slept for a couple hours and then the happiness ended. How I already wish we were back in the PICU with all our favorite nurses. I mixed the formula and the Tylenol with codeine just in case. And then because he doesn’t like it in the bottle I syringed it all slowly into his mouth. But he still hated it. And about an hour into doing so, and just about finished the dose, he vomited. Everywhere. Projectile, never ended puke. And at that point you can’t give them anymore because you don’t know how much they actually got. So it took a lot of rocking to get him to sleep again. His crib was all set up like his bed in the PICU this week. After a frustrating evening, he was asleep in his bed, I was sleeping next to him on the floor. I thought we were good. Sawyer was up 4 times. Up meaning needing to be out of the crib for various reasons, awake even more times. So this morning after dealing with him throwing up regular Tylenol too, I passed out on the couch. So don’t worry I still got some sleep in too.

But it seems like we just continued down that road. All day Sawyer has been upset. Running a low grade fever, coughing, in pain. Every time we got him to sleep, only in our arms, if we moved even slightly we would wake him up. After getting no sleep all day I thought he would for sure sleep tonight. I was very much wrong. Ive been rocking him back to sleep since 7. And after pulling everything out of that bed and putting him down on his tummy he is finally asleep at 12:30. Just in time for me to curl up on his floor again.

But the swelling is down more and more every day. So it’s still something to celebrate. Ive seen lives cut too short in the last couple days. Sorry to see the passing of a young man I went to school with. A baby in the PICU who’s parents couldn’t be there for him at 5 months for various reasons, probably won’t survive the week. Its been a tough week emotionally and physically {sleep is one magical thing, and when you take it away it can do some pretty wacky things to you. I think Ive felt 3 “earthquakes” this week. ūüôĀ }So even though I am wishing we were back in the PICU with help, I am grateful we were allowed to leave with this recovering baby and each new day we get with him. Here’s to hoping tomorrow will be better.

Recovery Day 4.

Most of you know we were not discharged Sunday morning like some nurses expected. I can’t tell you how relived I was. Sawyer and I both slept well again, due to another great night nurse. I have a theory all the best nurses are night nurses. At least that’s what we have experienced. I was abruptly woken up by a replacement nurse from the NICU, they were short staffed today and she was helping out. I would have thought NICU nurses would be more gentle and understanding of little ones. This was not the case. Without asking me how I felt about it, she cut Sawyer off morphine cold turkey. Then she put the replacing tylenol with codine in his bottle without asking me again. I spent the next hour trying to trick sawyer into eating the bottle. He got very frustrated and upset because of the pain he was now in. At this point my husband had asked for our nurse to return 3 times to try and get everything under control. We never saw her again. They replaced her with another NICU nurse and proved that they do also have souls and care about tiny screams that never seem to end. Needless to say it was a frustrating morning.

They decided to keep Sawyer another night because he was still not able to open his eyes, they were at that point too swollen. However they were remarkably better looking. Never would I have looked a baby and said this looked fantastic but considering where we have been lately, I am thrilled. Every hour seems to get better and better. His color has returned and he is even acting like Sawyer. Movements and sounds he makes touch my heart in so many ways. His fever was down most of the day but its a bit high sitting at 100.5 right now. They don’t seem too concerned about it. They said it could last the first week.

We had such a calm day, Mommy even kicked Grandma out for some quiet time for everyone. It was just what I needed. And I was all recharged in time for a visit from Auntie Jess. Which was great until Sawyer was due for another round of tylenol with codine. He had thrown it up around noon, but I thought it was because it coincided with another dose of medicine. So just as we got to the end of this dose Sawyer threw up everything and more. It just kept coming, I have never personally seen a child throw up that much. It was startling, but he didn’t give me a chance to think about it, because he was so very upset and crying. He was reaching for me and I got to hold him again. To try and comfort him. To my delight Sawyer chose this moment to open his eyes. It was the first time I got a little misty through this whole ordeal. Happy misty. They didn’t open all the way. More like a little peek. Im not even sure he could really see anything. But it was good enough for me. Im sure in the morning he will be able to actually see!

Because he was so¬†agitated¬†from being sick he was very awake. He was pulling at everything he could get his hands on. I had to finally cover his right hand with a sock.They could not give him a second dose due to overdosing a small child. Try explaining that to the 8 month old in severe pain. I would say it was the hardest night. Which doesn’t make me look forward to taking him home on our own. Without nurses to help with everything. But we will do our best. Sawyer is making huge recovery steps every day. I can’t wait till he is back to his grinning red headed goofy self again. I have almost forgotten how bright his big smile is. Its going to make my whole life when I see it again.

So not the worst day, but not our best day either. Still keeping our chin up. Still grateful for every minute of recovery. One step closer to having this completely behind us. I better get to sleep because I think I know it’s going to be a long night.