Monday, December 31, 2012

Buddy the Elf

Buddy the Elf is one of our families favorite Christmas traditions! It is always so fun when he arrives, but after too many 5 O clock wake ups to remember his coming it wasn't too sad to see him leave. He was always sure to cause some sort of mischeif and make a pretty good mess. Boston was so worried that Carter was going to touch him and ruin his magic power to go back to Santa every night. 

Our mornings do seem to be a little less exciting now that Christmas is over. We would wake up and find buddy every morning, do our Lego advent, move our Annie the advent, do our Christmas countdown on the computer, and our tree count down. We are for sure covered when it comes advent calendars.

Preschool Christmas Party

I LOVE going to Boston's preschool and seeing him interact with all his friends. School is definitely his favorite place to be. Every time I leave there I always think "no wonder he loves that place so much!" For the month of December they did a Christmas around the world theme and learned how Christmas is celebrated all over the world. For their party this year they had a Mexican theme. 
 I think Boston's time in T-ball payed off. He whacked that thing so hard!
 Going in for the gold. 
 He was very picky about the candy he picked up. 
 Then they did a little paper plate ice skating. His teacher helped him do some tricks which put the biggest smile on his face. 
 I can't take it he is just too cute!

 It was no secret that they all loved using the instruments. It was difficult to hear them singing when they came out. So Cute!

 He was SO excited to give me his present he made. He would talked about it all week leading up to his party. 
 He was pretty happy to have Daddy there this time. We definitely had a moment of "O my gosh this is his last preschool Christmas party ever!" I can't even think about him going to elementary so weird. 
And then he made me cry by asking Santa for Carter's trach to come out. Such a sweet tender hearted boy! 

Christmas Lights

I am all for bribery when it comes to parenting. One thing that worked well for us this Christmas season to to bribe the boys with Christmas light walks. Worked like a charm every time. 
 Boston loved to pose next to his favorite things when we walked around the neighborhood. 
 Carter not so much. 

 One night we went and drove around the Deerfeild community. It seriously is amazing! I would feel so much pressure if I lived in that neighborhood. Almost every house it decked out! Not kidding check it out on You Tube. 

 The boys LOVED this Cars land house. 

This was definitely one of our favorite Christmas time activites. 

"Winter Walks"

 Our "winter" hasn't been very wintry at all. In fact it's been pretty warm. Much too warm if you ask me. 
I try not to complain because the warmer weather has meant we have been able to get out more and not worry about all the sickness. 
This particular Sunday we were gone for over two hours. Trav was still at church so the boys and I headed out. Carter still wasn't feeling too great, but he sure was happy to be out of the house. Boston loved hiking around the "forest"

For some odd reason Boston has LOVED to go on bike/car rides. Meaning he rides his bike and I follow him in the car around the neighborhood. SO random, but hey if you knew how much he loved it you would follow him around in your car at walking speed too. As I'm typing this I am realizing how ridiculous this must look to our neighbors. Ha!

Thursday, December 27, 2012

The Birthday Boy

Once again we didn't have much of a celebration for Carter's Birthday. Maybe next year. The day was pretty low key all around. When Trav got home from work we finally opened presents. Boston had been begging all day to do it. Good thing Boston was so excited to open presents because Carter definitely was not. Everytime we would hand him a present he would turn around and stack it back up on the pile. Then when we would "help" him open them he would cry. Ha we ended up letting Boston rip into them. Once they were open Carter was more than excited about what was inside. Little man got spoiled rotten Monster Truck style. Not sure what it is but he loves the big trucks. 

Since he doesn't eat pretty much anything we didn't have a special dinner for him. Although if we did it would have been something like beef jerky, sour cream, and M&M's since that is what he is currently liking. Definitely a well balanced palate. One thing he pretty much never turns down is a tasty ice cream drumstick. He was in Heaven while eating it. 

We sure are crazy about this Car loving boy!

Thursday, December 20, 2012


We had a special Santa visit our house again this year. Santa coming was a big surprise so when we answered the door we got a picture perfect reaction. Only no picture was taken.   
 Boston had absolutely no reservations and made sure to tell Santa about the Marble track he wants.
 Carter on the other hand was not a fan. Santa who has named himself Janta (because he's Jewish) was one of our Respiratory Therapists in the NICU. He is so great to come over so we don't have to take him to the germ fest mall. I think Carter prefers this Santa in scrubs. 
 Family pic
 Boston thought this was the greatest thing ever! Really what 4 year old gets to sit and chat with Santa in their own home. 
 Boston and Jane are preschool buddies. This morning on the way to school they were SO excited to tell their class about it. 
Eventually Carter warmed up a little and felt brave enough to give Santa a high five and knuckles. As you can tell he was a little weary and if Santa made a move he would loose it. 

Wednesday, December 19, 2012

Sleep Study Results

Not sure where to even start I have been given information over load today....

I guess I will start where the result info started for us, but I should warn you that this might be information overload. I need to document this for my own memory.

Tuesday morning I put a call in to Dr. McClay our ENT to see if results where back. I knew he was in surgery that day, but thought I would give it a try. Lisa his nurse called back that afternoon and read what she could from the results. She asked for my take on how he did, which was "pretty good, but I have NO idea there wasn't any info in my room". She said the sleep doc reported loud breathing, restlessness, jerking awake, and to wait on decannulation and repeat sleep study in 6 months!!! She said there was a lot more info on there, but she couldn't read the charts. I about died when she said 6 months. That is a long time!

We sent off and email to Dr. McClay explaining what Lisa told us and pretty much asking "what in the world happened in there". We got this e-mail back from McClay...

"It looks like there are significant central apnea's, meaning the brain stops for some reason, and obstructive apnea's, meaning something is blocking the airway. I'll need to talk with the sleep doc who read it and your pulmonary doc. We don't have to wait 6 months to get another sleep study. We can do it in a few weeks, but maybe we should not decannulate on Thursday until I can see him again."

To clarify Central apnea means the the brain stops sending the message to your muscles to breathe. This is a neurological problem. Obstructive apnea means that there is something blocking the airway that doesn't allow the air to get all the way to his lungs. 

So from this we pretty much freaked out. Using the word significant when it came to a neurological problem freaked me out and hello we have put Carter through the ringer the last couple months to get him a perfect airway and now your telling me there is still something wrong with it!!!! To say the least yesterday was not a good day.

Early this morning we had a conference call with Dr. McClay to hear more. He started the conversation saying he was confused. Not too comforting, but Dr. McClay isn't one for comforting. He went on to tell us that we all have apnea and a normal range of apnea episodes is to have 2-4 every sleep cycle. Meaning that in 8 hours of sleep you are ok to have anywhere from 15-25 apnea episodes. In 4 hours Carter had 96!!! Do you see where the significant word came from? He couldn't give us much information on why he would have the Central apnea episodes, and was confused why he would have the obstructive. He texted Dr. Gelfand our Pulmonary doc and told him he needed to get us in right away to figure it out. I was so glad he took care of getting us in because Gelfand is a busy guy and is not easy to get into. 

So this afternoon we met with Dr. Gelfand and his sleep doctor to go over the results. When Gelfand came in he told us it was Bogus! He pretty much said he was set up to fail. Carter had never been capped until mid November. Two weeks before the sleep study he had his tonsils and adenoids removed, which is tough on any kiddo, but especially one with Carter's history. Micro Preemies also tend to take longer for swelling to go down, which has always been the case for Carter. So with that said he had one good week where he still didn't feel too hot from the virus of being capped. The odds definitely weren't on his side.

The sleep doc told us that he had no apnea during the study when he wasn't capped. This was great news and pretty much meant that the obstructive apnea was also causing the central apnea. The doc said that usually kids that had that severe of apnea (96 episodes severe) had clear neurological issues in their everyday life. We have never seen anything neurologically off with Carter and no doctor has ever expressed concern. He didn't feel any need to do a MRI to check out his brain at this time unless we find out that Carter has bilateral paralyzed vocal chords, because that would mean the brain wasn't sending the message. We are almost positive he just has the left side paralyzed.

There is so much more to this, but it is all kinda scary stuff that we don't need to worry about right now. Overall the doctors think that the obstructions are 
1. Swelling still from Tonsil and Adenoids
2. The trach itself. It's pretty much a straw in the middle of his airway taking up space that he can't breathe out of when capped.
3. His paralyzed vocal chord. Since it doesn't move it becomes obstructive.

So the plan now is to give the swelling 4-6 more weeks to go down. The night of the sleep study Carter will wear a smaller size trach so it doesn't take up as much space. The vocal chords are something he will have to learn to deal with. If all goes well on that study we will decannulate then. 

Two years ago we were praying for a Christmas miracle that our sweet baby boy born way too early would be able to live and be with us. We prayed so hard that we would just be able to raise him. We didn't care under what circumstances. Although this trach business has not been my favorite thing considering his odds in the beginning it has been incredible.

So although we didn't get our Christmas miracle this year it's hard to be too disappointed about it when we think back to the one we received two years ago. 

I have wished so many times over the past two years that I could take the pain away, that I could endure the surgeries, struggles, and all the he has to go through. I wished it could be me not him. A while ago when I was having one of those wishing moments I had the thought that if my Heavenly Father wanted me to go through what Carter had it could have been that way. But he didn't. He needed Carter to go through it. I know that Carter has to go through these trials so that I can learn from them. So that someday he can learn from them. And if he is going to have to endure through them I better do all that I can to learn what I am supposed to so they were for a reason. A good reason. I haven't learned all that I need to learn, but I can promise that I am doing my everything I can to continue to learn.

Saturday, December 15, 2012

Sleep Study

Is that not the saddest picture you have ever seen?

It took everything I had to not cry during this process. Getting all 34 probes on him was so sad! At the beginning he was fighting it. I kept telling him to "be strong little man and hold still". About half way though he did just that. He sat still layed his head on my shoulder and just cried. Didn't fight it and that is when my heart broke. To be honest I am tired of him having to be strong and do hard things. My heart hurts thinking about all he has to do.  For some reason this was so hard for me to watch him go through. Not that is caused him any pain or anything, but he hated it and that was enough for me. 

Previous to this he had only slept with his trach capped of for about twenty minutes two different times in the car and one short nap at home. I had no idea how he was going to do and was a huge ball of nerves. This whole decanulation thing has been so hard for me. It is the first time during the last two years that we have ever had a date when this would be over. I honestly cant decide if it is a good thing or not. Maybe if I was more confident that it was actually going to happen I would think differently. The first thirty minutes he was asleep were not so good. He was sounding wheezy and coughing. I was going to walk out in the hall and say we're done, this isn't going to happen, and head home. I knew I couldn't do it before saying one more prayer. I got on my knees and held his hand and prayed harder than I had in a long time. My prayers (and many others) were answered immediately. He seriously flipped a switch. He was calm and sleeping peacefully the rest of the time he was capped.

They capped him and monitored him for half the night and then un-capped and monitored him for the rest. They will compare how he slept and whatever those 34 probes monitored both being capped and un-capped. There were zero monitors in my room so I have NO idea how his saturation levels were or anything. It was making me crazy! The tech came in our room and flipped on all the lights at 5:55 am and said your done. Seriously lady! She ripped off the probes, Carter pointed to his stroller, and we were home by 6:30 am. The thing that drove me the most crazy is that the Tech couldn't tell us anything! We most likely wont know anything until Wednesday, which is the day before we are supposed to decanulate. To say my stomach has been a little off would be a big understatement. I'm dying!!!

To be honest I think I would be more surprised at this point if he does get decanulated. I have been capping him some while he sleeps since the study and am not totally convinced that he is ready. His saturation levels never drop they are always in the high 90's, but every once in a while he will do this thing where he makes a gasp and has to catch his breath. Who knows though. Since he has never slept breathing out his mouth and nose I have no idea what his normal is. If the Doctors don't think he is ready a huge part of me hopes that it is because something needs to be fixed and not just more time. I am tired of "giving it time". 

Dear Patience, I need more of you.

On another note when we went to the ENT the other day he said that Carter's tubes need to be replaced and "we might as well do it when we decanulate he will already be asleep". He then went on to joke about how almost everything he went to school for he has practiced on Carter in the last three months. I jokingly said "I'm glad he can keep you current". Obviously he was exaggerating, but seriously this kid has been through the ringer. Have I mentioned I'm tired of it?

Thursday, December 13, 2012


Dear Carter,

I can't believe you are two years old! Although the last two years have been long and tough they seem to have flown by. Your Daddy and I were joking the other day that your adjusted age shouldn't be 20 months it should be 10 years! You have gone through more in the past two years than most do in ten or more. You are one tough cookie that's for sure. 
 Have I mentioned lately how stubborn you have become? You like things a certain way and make sure to let it be known. Take walking for instance.... I am certain you could walk on your own if you weren't so stubborn. You go limp at the sight of your walker and ever since getting your braces you only want to walk holding onto two fingers, not one, but two. The other day we tricked you into taking a couple steps on your own. You would have thought we had told you some terrible news by the way you looked at us. You sure can do a pretty good stink eye. Other things you can do but choose not to are pulling yourself to standing, balancing, and cruising along furniture. You have done them all before, but for whatever reason your holding out on really doing it. We know you will when your ready, because that's just how you roll. 
 You have the greatest smile! We haven't seen it as much in the past couple months as we used to and boy are we looking forward to it making it's full time comeback. I don't blame you though, you have certainly been through the ringer lately. There are so many things you do that make us smile though. We LOVE when you "talk" to us. You have the best whisper/growl for a voice and some days you use it a lot and we love it. Also the way that you are happily trying most foods these days is pretty awesome. We have definitely passed the aversion stage of texture and what not, but boy are we in for it when it comes to actually swallowing the food. When you are finished eating it looks as if five toddlers were eating with you. SO messy!!! Good thing Mom enjoys sweeping, because I sure do it a lot. The whole feeding thing is going to be a long battle, but we know you will get it!
 O the cheeks! I LOVE em! Can you tell how much you love me smootchin' them? Thanks for letting me do it all day long, because really I can't resist they are so yummy! You have become quite the Mommas boy lately. If stubbornness weren't the reason for you not walking then the fact that you live on  my hip definitely is. You are so nice to lay your head on my shoulder and give me some pretty darn good snuggles. You are definitely following the route your big brother did and getting more snugly the older you get. 
 Speaking of your older brother you are a big fan of him. Thank goodness he is so patient with you because you have definitely become the annoying little brother. You love to go and sit on top of whatever he is doing or break whatever he has made. It's funny and sad all at the same time. You guys are the best wrestling partners and make a pretty good mess making team.  
 I love this picture of you and Daddy! I am pretty sure your favorite part of the day is when he gets home from work. The second you hear the door alarm you make a mad crawling dash to the front door. You love to do tricks and wrestle with Daddy. I think you know he is a softy and I'm pretty sure you take advantage of it all you can. I don't blame you though... in fact I love it because whatever it is you are trying to get it usually comes with some pretty awesome smiles. Your Daddy loves you so much! He worries so much about providing you and your brother with the best and works so hard to give you guys a great life! I hope you always know how lucky you are to have him as your Dad. He's the best if you ask me!
 Why so serious? I can't not mention how big of a pill you were when taking these pictures. You wanted to do nothing but walk around. Good thing Nikki is so awesome, because you didn't give her much to work with. This is totally your I know what I want look and I'm going to figure out a way to get it. Figuring out what you want takes a lot of patience on your part these days. You have times where you get really frustrated that you cant communicate and it breaks our hearts. We spend a lot of time during the day following your pointed finger around the house to find out exactly what it is you want. Thank goodness you have taken more interest in signing these days it has been a big help and makes you pretty happy that you can communicate a little. 
 One of my favorite things about you right now is definitely your dance moves. If you hear any music you start waving your arms and shaking your body. It's pretty much THE cutest thing ever! I can always count on you to make me smile when I'm driving. All I have to do is turn on the music and peak at you in the rear view mirror and you are sure to be groovin'. You are loving cars these days. Specifically monster trucks! You are also a ball lover and have made throwing balls a very serious matter. Your wind up is pretty intense! You love to play catch with Daddy and Boston, but neither you or Boston like to take turns so it usually doesn't last very long. Another favorite thing of yours is finding marbles (how do you always find them?!?!) and throwing them on the tile floor and watching them bounce all over the place. You LOVE to be outside! You grab my fingers and walk to the door multiple times a day. Mostly you just love to walk up and down the stairs. We make lots of walks to the street and back almost every day. 
 Carter boy I hope you know what a special boy you are. I thank my Heavenly Father daily for letting me be your Mom. Some days I get down on myself that I don't do a good job or that I could do a better job, but know this I love you so much and I am doing the best I can. Thank you for all you have taught me. Over the last two years I have Learned more patience, how to appreciate the little things, to slow down, to give more thanks, the have more faith, to love deeper, to trust in my Heavenly Father and His timing, and how precious life really is. Thank You!
 I always say every body needs a Boston and Carter. It's true you boys are my everything. Your Daddy and I sure are crazy about you.

I am so blessed to be your Momma.