Month: June 2012

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.

Sawyer James
Birth-Present

Just realizing how fast the time goes. Sawyer is going to be 8 months in 2 weeks. I can’t believe it. My little boy is growing too fast! Sometimes the days seem to drag on as we wait, but we are 5 nights away from the surgery now! Exciting and not at the same time. I had my nice little cry at a friends house yesterday, but I’m all tied up in my shiny strong box with a bow again. But I am just constantly looking at all of Sawyers pictures. Seeing how much he has changed in a short amount of time. So hopefully this week goes by just as fast!

Sawyer and Jack
Birth and 7 Months

Sawyer and his little Buddy Jack. Born one day apart! Sawyer is only older by a couple hours really. I have worked for Jack’s Mommy in the past watching her two older boys! Jack and Sawyer first met at his baby shower and have gotten back together a few times since then. We just had a play date last week and wow have they grown since the first time. {sawyer is in the right, and then left of the two pictures} Jack {‘s Mommy} was the one who was so super thoughtful when Sawyer was diagnosed, and sent cards and the little surgeon bear. Who will accompany us to the hospital on Wednesday. I hope these two continue to grown up together.

Sawyer and Claire
1 Month, 3 Months
5 Months, 7 Months

This is Sawyers girlfriend Claire. I adore that these two have known each other from day one too. I continue to get shots of them together at all our play dates. Which have turned into a mini Mommy’s weekly group. Those little meet ups have given me my sanity back. Good for Mommy and Great for Sawyer.  It was so fun being pregnant with a friend at the same time and now these two get to have a lasting friendship as well!

Bump to Baby
9 Months Pregnant-3 Months Old

The ultimate time flies photo. I can’t believe last year I had just found out our little bump was going to be a little boy. It seems forever ago and still like yesterday. Many of you know I was desperately wishing for a little girl. I had never grown up with boys and I’m as girly as it gets. I was so afraid of not knowing what to do with a boy! Now I really truly can’t imagine life without him. His smile brightens my day, his laughter lights up my world. And even when he wakes up at five am I find myself fighting the smiles when he just gives me his cutest faces, because he is so excited to see mine again. He is the reason I am going to be strong on Wednesday. My little man, the best thing to ever happen to us.