Category: Medical

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.

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. 🙁 }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.

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.

Both Sawyer and I had a fantastic night of sleep. {special thank you to our night nurse!} I think we were both ready for a solid sleep. I fell asleep typing my last post, at about 11:30 and slept until 6 am. Woke up to Sawyer but she had him back asleep so fast that I just sat down to do an update and all of a sudden I was waking up again 2 hours later.

My mom arrived shortly after to take me to breakfast around 11. We were only gone for an hour at the very most, and when we got back he looked drastically better. I felt like the must have let out the air like a balloon. It almost seemed impossible to improve that well, that fast. Of course to anyone not familiar it still looks very distressing. His eyes have begun to bruise, and they could continue to get worse. They are still very swollen, but the rest of his features, like cheeks and ears and mouth have started to return to normal.

Highlight of the day being that I got to hold Sawyer for the first time, for more than 5 minutes. I did get to hold him yesterday while they changed the sheets. But just standing over the bed. Today I had him in the chair for almost 2 hours and feeding him a bottle. Very sweet but wow has that kid put on some solid weight! He was asleep the whole time so just dead weight+extra fluid weight= some sore legs!

And we only had one mishap today. After being held for so long, our nurse was a little inattentive and didn’t notice Sawyers rising temperature. We went from 99.2 to 102.8. Not a good spike, and it was frustrating that they let it get that high without noticing, and then played it off like it was no big deal. And because of that spike I can’t imagine we would be sent home tomorrow morning. 12 hours from now can’t change the fact that his eyes are still swollen shut, and most importantly that he is on morphine every 2 hours, Tylenol and zantac every 4 hours and barely starting to eat again. He screams as soon as he gets within 20 minutes of his morphine renewal. And it takes a lot to calm him back down. They will not send me home with anything about Tylenol, because with a baby this size he can be easily over dosed. So I just wouldn’t think they can take him off morphine cold turkey like that. But I guess only time can tell.

If we did get discharged we would leave at 11 am. So for all I know this is my last post from the Hospital. {again hoping that doesn’t happen} I feel so blessed this is all we are dealing with. I could share some heartbreaking stories from this weekend. But no one else needs to know them. Doesn’t change anything, except that we should all be a little more grateful for what we have. Did I expect to be grateful to be in the PICU last year? Nope but I am humbled more and more with each conversation I have within these walls. Its even more amazing to see the little kids who can put on a brighter smile while on their second month hooked to IV poles, than most adults.

Good Day. Getting better. Almost done.

Today was a much quieter day. Almost no complications.

We started the day at 430am. Went back to bed half an hour later at the request of my night nurse. Apparently I looked as tired as I felt. {which must have been scary!} Woke up again and our residents were doing rounds. The plastic team came in to remove Sawyers bandages and drain {for blood from the incision.} He was really good during it. I think the morphine helped, but he didnt even cry when they pulled that deceivingly long drain tube out.  He is a fighter and is definitely trying to prove that to the nursing staff!

His fever is almost gone, but is still to be expected after a surgery such as this, and on a little baby. They have covered his hand and arms with socks to help save his face from being rubbed off. Morphine can make your face very itchy and he is already so swollen I am sure its just adding to the confusions. If one day I woke up to find I could no longer open my eyes and see, I would be behaving much worse than Sawyer! He was fantastic all day, and at the very end of our day his results came back with low blood sugar. But he started eating a little bit so we got it back up about an hour later.

Lots of visitors today. Grandma this morning, Play date Mommies to hold over lunch time so Sawyer didn’t have to be alone. Daddy took the whole afternoon and we rounded it out with Auntie Jess again. Who brought by far the best presents for Sawyer. Both cousins Tate and Beckett made Sawyer get well soon cards! They are just absolutely precious. And I cant wait to add them to his memory box! I love Beck’s dinosaur ;D and Tate’s version of Sawyer in a bed, bandage and all! Could they be any cuter! Then Mommy took a big step and left the hospital to take a shower at a friends house who lives super close to the hospital.

And now Mommy has to go to sleep because I am pretty sure dreaming about falling asleep while driving the car is a bad sign of exhaustion. Sawyer just got another dose of morphine so hopefully he’s ok with his new night nurse. And I just fell asleep between sentences, so time to sleep!

{Mini update since I am plugging in the pictures for this post from last night} We had a new night nurse last night and she was so good, she managed to let mommy sleep through the night. I forgot this is what rested feels like. I slept from 11:30-8! Only waking up once at 6 am. It was an amazing surprise. Now grandma is here and we are going to go get some breakfast. Everyone says Sawyer is doing fantastic and we will probably be going home tomorrow. {but mommy secretly wishes they will hold us till Monday. Just seems to early to be going home.}

I feel like time inside this glass box were living in is stopped. I’ve been in this hospital for 42 hours straight. If it isn’t stopped it moves as slow as possible.

I just stared at those 3 sentences for another hour. I am not on my game for writing today. But as promised: updates!

Sawyer had a really good night, we had a fantastic night nurse that took really good care of him. She will be back tonight and tomorrow. I did manage to get some sleep in, on a reclining chair in the room with Sawyer. But I got up with him when he cried. Usually just with the nurse doing checks. I woke up at 530 this morning and he continued to have a good morning with me. Daddy arrived at 10 and took mommy for a much needed breakfast break. We hung out in our room and Sawyers face really began to swell, When the morphine gets close to wearing off he is agitated and whimpers in pain. He was doing ok eating some formula and pedialyte but is no  longer taking either. We had a couple visitors with care packages and an emergency gloworm drop off. Sawyers favorite toy decided today was the day to have the battery die, sing a couple creepily slow songs before shutting down. Brandon and my mom switched places. {only 2 visitors in a room at a time.}

And everything was going ok but we had a couple minor complications this afternoon. He was very pale and although swelling in the face is normal, he was swelling all over. His poor puffy body wouldn’t bleed when they stuck his foot for a blood test. It has since gone down and his color is coming back after receiving a couple different drip lines. Then we had a spike in his heart rate. Reaching 196, it should be ideally sitting at a 140, but up to 170ish for allowing a rise due to his fever. He had blood drawn and an EKG to rule everything out. All the tests came back normal! Music to my ears. He is now doing much better, and mommy is having a hard time staying awake. Adrenaline only works when its not all normal and in a quiet lull.

The best part of today has been that I got to finally hold Sawyer. He is still all hooked up but they had to change some sheets and lift him so I got to briefly hold that little trouper. With all that fluid in him + on morphine and asleep, he felt like he doubled his weight. And though Ive been looking at that beautiful but swollen face all morning, I had no idea how swollen it was until I had it in my arms. But he is doing really well now. Sleeps most of the day and night. Levels are all returning to normal. I was told he was having another blood transfusion, just waiting on the blood bank but I have yet to see that happen. He’s all comfy on his little hospital crib. And even though he’s so swollen and looks nothing like my little Sawyer right now, he has mannerism’s that remind me of his super sweet self. A little laugh noise, an arm movement, sucking his lips in, even a half hearted smile{even if I know its just gas!} All things that remind us he’s still our little guy.

And since you are all writing such nice messages about how strong I am being. I must admit I am also surprised! But it is very humbling when you are in the PICU. There is a little baby to our right who is alone much of the time. And his alarms go off often. Meanwhile we have people dropping off care packages and visiting and asking if they can see him. On the other side is a 12 yr old boy who was hit by a car and dragged 40 yards. Lots of broken bones and complications. And both their mothers are being strong. So why wouldn’t I. sawyer is doing great and in recovery for a planned routine{ish} surgery. We are so lucky this is all we have to deal with.

We have even been so lucky to have lots of friends and family visiting. Auntie Jess broke up Brandon and Grandma’s visits and it was just perfect. I need someone to cry over this baby, because we just can’t. Daddy came back for a late night visit but didn’t stay the night again. He has been allowed to, at our lovely nurses request but we just find one of us might as well get a decent sleep. And I still can’t find it in me to leave.

Thanks for all the long distance love being sent our way. We are being kept busy and distracted with all the little messages of encouragement. Thanks for the continued support!

Before Sawyer was born I envisioned the mother I would be. But you can never predict the future. I thought since I cry in every Disney movie ever, that I would be a mess of a mom during shots and little boo boo’s. And I never envisioned spending a week in the PICU. But life is a roller coaster and I have always been one to enjoy the ride. Those big hills and loops are my favorite. And have we ever been in a loop the last 4 months. And finally we are on that last climb about to finish this thrill ride.

It’s very true the quote “You were given this life, because you were strong enough to live it.” I have been told repetitively that other’s could not imagine what we are going through. Like I said before I never thought I would be the strong mom. But here I am on my 17th hour in this hospital, and minimal tears shed. That’s not to say I didn’t cry, just less than I would have thought. Because Sawyer needs someone who is fighting for him, and making sure everything is ok.

We started our morning at 4:30am. After only sleeping an hour, we packed up and headed out the door. We were actually pretty calm. Checked in and did a lot of waiting. Surprisingly, Sawyer did really well with not being able to eat after 11pm. I managed to get him to have another nap in my amrs, and even when he woke up he was just his happy self. When the doctor’s came to talk and it was time to hand Sawyer over to the nurses it broke my heart. It was my one big breaking point. We were told babies this little usually scream for you but they put them under so fast it doesn’t last long. But little Sawyer was charming everyone. He didn’t even look back when they walked away. He was enjoying all the bustle going on around him. Which was nice to see him so calm, but extremely hard to see him disappear around a door we could not enter. Brandon and I stood there embraced in each others grief for what felt like forever. I thought the tears would never stop. We made our way to a waiting room to settle in.

We were here early enough to have the room to ourselves for awhile, and then one more family joined us in the private room, otherwise we would have just been waiting in the hallway. We got some breakfast, played some games on the ipad. But the thing that passed the most time was reading everyone’s messages on facebook and emails. I am truly touched by them all. People from all parts of our lives reached out and for that I cannot thank you enough. Some people I haven’t spoken to in years, and even the simplest of messages were so meaningful. I am amazed each day just how many people love this little boy of mine. We are so lucky to share that with him.

Just as our visitors started to arrive and make lunch plans, our Neurosurgeon popped in casually to let us know everything had gone as good as possible! It was a rush of relief and some more tears. Happy tears this time. Next the Plastic surgeon arrived to tell us he was doing so well in recovery that they were removing his breathing tube and was going to be transferred directly to PICU. We had one hour to waste, so we all went for lunch. Auntie Jess and Uncle Matt joined us, as well as Sawyer’s little play date girlfriend Claire and her Mommy Becky. It was so great to be surrounded by friends and family during that time. And the cafeteria has  surprisingly good food!

I will say I didn’t watch the clock and that hour went by pretty fast. Jessica mentioned that we could go and see him already, and I almost didn’t want to go. I was so happy that he was out of surgery, but I was a little scared to see him all wrapped up. He wasn’t going to look like my baby anymore. We are only allowed 2 visitors at a time and Brandon and I both count as one, so if anyone else wanted to see him, one of us had to leave. When we first saw him he was so little,wrapped up, tubes and machine everywhere. He was still losing quite a bit of blood, they had done 3 transfusions in the operating room, And did another on this side right away. Since then 2 more. Its slowed but hasn’t completely stopped. And they didn’t finish the last transfusion because he started to run a fever during it last night. Each of our visitors had a chance to see Sawyer, in turns. Becky brought a whole bag of snack and drinks, socks and toys. Most importantly a roll of quarters for the vending machines! Auntie Jess got a great big monkey balloon and adorable stuffed monkey to brighten Sawyers room. Both gifts very thoughtful and much appreciated.

Brandon and I spent the next 3 hours alone with him, while my mom went home to be with the dogs. I had a quick moment of lightheadedness, just processing it all must have given my body a little push. It passed quickly after I sat down. The time passes much faster on this side of the waiting room. Mom came back to meet us for dinner in the hospital. Then she and Brandon switched off and he went home for a break. Originally we were told only one of us could stay the night, but they waived that. But already being home, we decided Brandon would just have a good nights rest there. They took off his oxygen mask and to my amazement, my kid who give up his soother 2 months ago hasn’t stopped sucking on it for hours. It has taken a huge weight off my shoulders because it is a comfort to him while he cannot see due to swelling. {plus I get to use all the super cute soothers again!}He did manage to open his eyes for a short amount of time last night. Which is nice that he got to see us and know we are here.It will be another 3 days before we will see those beautiful eyes again. My mom left around 10pm  and I started getting ready for bed about an hour later. Its not the most ideal situation but I got a decent night sleep on the reclining chair in Sawyers room.

Sawyer himself is doing so well. Started to swell this morning, and slightly bruise. He is already eating, oxygen mask off, took the catheter out this morning. They will start removing some tubes this afternoon, and then hopefully I can hold my little guy again! But he is a fighter! Giving the nurses all kinds of trouble for anything they want to do. He almost flipped over twice this morning. Always when she turns her back to him. The doctors have just been by this morning to check on him. They will leave the drain and dressing on today and hopefully remove it tomorrow.

The nurses have been fantastic. {must be those cupcakes I bribed them with;)} Both our first and our night nurse, who is returned again tonight and tomorrow! are fantastic. I am so grateful for that. The worst of our journey is over and we can begin to heal and leave this all behind. I never imagine myself sitting in this room, but its now been a part of our lives and Sawyer is better for it. And I have discovered I am a much stronger person that I ever knew. I have probably forgotten half of what went on, and maybe I won’t ever think of those details again. Its all in the past now. Recovery going well. One day down 4 more to go.

7:15pm I am rocking Sawyer to sleep and he is of course fighting it.

7:55pm I am still rocking Sawyer to sleep. He is out and has been for 3o minutes. But I can’t put him down.

8:30pm I still can’t put him down.

8:50pm I have posted my pre written blog post and Im feeling good. Strong. Touched by the messages and support pouring in.

9:00pm I think Im going to be sick.

9:30pm I haven’t eaten anything since 1pm and I can’t even think about food, I am fighting the urge to sit in the bathroom all night and purge my entire body.

9:47pm Reading comments on my last blog post breaks me first tears. I have been holding them at bay successfully until I read my sisters comment. Reminding me of a quote I repeated to her over and over again, “Always remember you are braver than you believe, Stronger than you seem, But the most important thing is, even if we’re apart, I’ll always be with you.”

10:00pm I just made “bribery cupcakes” I am going to butter up {literally} those nurses so I am the happiest patient on their mind. What else am I supposed to do with my time tonight.

10:12pm Scratch that. Ingredients I bought for frosting was not my regular ones and even with the exact same measurements they were WAY off. So off to the store for replacements. May have taken the long way back with music on high.

10:23pm My stomach is doing flips that I didn’t know were possible.

11:20 Just finished feeding Sawyer his last bottle. He was so sound asleep he didn’t even stir when I scooped him out of his crib and snuggled him into the glider with me. He drained it dry. I didnt want to put him down again. But I did. And he snuggled into his bear. So sweet.

12:35am Round 2 of making frosting. I always have a few “safety” tastes but tonight I just do not want any food. I didn’t even buy chips at the store. *gasp* seriously not wanting anything in my stomach.

1:00am I can’t sleep. Though I feel like Ive never been this tired. I am emotionally drained.

1:15am I am on my third load of laundry. I am never this productive. I have half packed bags for Sawyer and I. I am sure I brought all the wrong things and forgot everything I will actually need.

1:25am I am watching a teen mom reunion. Clearly there is nothing left on tv at this time of night.

2:08am I’m on pinterest. But what else would I be doing at 2:08am? Almost feels normal.

2:27am Fourth load of laundry.

2:40am Perhaps I could take a nap before getting up at 4am to get ready for this.

3:17 falling asleep on the couch watching the disney channel. Happy thoughts.

4:28 am Wake up.

5:00 am Here we go. On our way to the hospital. It’s going to be a long day and here we go.

Its here, we’ve waited forever, and I’ve been so angry and frustrated waiting and waiting. And yet these last days, even though they’ve felt longer than the one before, have gone by so fast. We are here. The day before the surgery.

This whole process I have maintained my composure. I have been strong when faced with a difficult path. And I am still 100% grateful this is all we are faced with. I know tomorrow in that great big Hospital there will be many parents and family and children dealing with life changing heartbreaks. I know some of those people deal with that daily. So for that alone I can be strong. But it doesn’t change your mind from wondering.

All those tiny little thoughts have dropped seeds, that planted tree’s, that grew and grew, and had bright vivid flowers in every part of my mind. My mind has been there and back with every possible way something could go wrong. The darkest corners of my mind goes even further. I cry sometimes just holding him. I hold him and rock him a bit longer, worried it could be the last time, worried that I would look back angry at myself for not doing it. I drive with the music in the car too loud, so I can’t hear my own thoughts. Because they can eat me alive.

I fight with Brandon more. And in between fights we are laughing till it hurts at 2 am about our dog who behaves like a cat and has a special toy she goes everywhere with. But then we fight again, because I am so anxious, nervous, overwhelmed and stressed about tomorrow. And I fight with him because I know he is my rock. He is strong when I need to be weak. And he is a great Father. But we only have each other to take that stress out on. And he does the same with me. And it’s ok. I know it will be just as hard on him as it is on me. But together we will get through it. Because he’s my best friend and I wouldn’t want anyone else there holding my hand.

Today was just the beginning of our tears. I pre-registered at the Hospital. And Sawyer had to have blood taken for hospital records. I had to hold him against my chest, another nurse had to hold his arm down and straight while another nurse had to draw the blood. He was crying before that needle hit him. And I have never heard a scream like the one that followed and lastest the next 20 minutes.It was so slow. I’ve had blood drawn many times and I have watched it easily fill 4 vials. They had to draw it out on him. It just slowly filled 2 vials. I never want to hear that scream again. I couldn’t comfort him at all. I tried to rock him and hold him. Nothing helped. He was so cautious if anyone came near him the rest of the appointment. It was heartbreaking to see distrust in such a tiny face.

But we made it through today just like we will tomorrow. It will be long. The longest day of my life. I already can’t eat anything out of fear of not keeping it down. My throat is tight and my tears are on the verge of my eyes already. But I am strong and we have so many people already helping and giving as much as they can. I very much appreciate it all. Thank you to everyone who is thinking of us tomorrow. I wouldn’t be able to do it without you.

So I’m going to try and get some sleep. And I’m going to probably fail at that. This is most likely going to be an experiment of how long I can go without sleeping. And tomorrow I am going to face the worst day of my life. And I know you will all be there behind me. And we will all be there for Sawyer. And he is so lucky for that. And I am lucky  for that. And those thoughts will still make their way in during that endless wait. But that’s part of being a Mommy. And that’s my life from now on. So I’ll be the best Mommy I can be this week.

Special thank you to everyone who has been with us through Sawyers diagnoses. It means the world to us that he is so very loved by friends and family around the world. All your words of support have been long distance hugs. And I thank you for each and every one. I love them and of course they are always welcome during this final and toughest chapter!

Again I will be posting updates through facebook, as well as hopefully doing daily blog updates. I can’t promise they will be inspiring or even remotely written well. They might just be awful picture after awful picture and my tears hitting random keys on my macbook. And there is your verbal warning again that I will be posting pictures of Sawyers surgery/recovery.

One more time, thank you. Thank you completely, from the bottom of my heart, for just being there. Even if its just to let me vent all over my blog. Thank you.