My Short Lived Texting Phase....

In my defense I have really had a lot going on this past month.  I started a new job, I have a friend who really needs me, Teg's surgery, etc... 

I'm not usually much of a texter.  One huge reason is b/c this summer I dropped my cell phone in the lake and the only damage to it was that the V and M on the keypad doesn't work anymore.  Do you know how many times you use the letter M...A LOT!!!  Anyways, this past month I guess I have stepped up my texting game b/c I more than doubled my limit.  Oops!  I would swear to you that I remember having a total conversation with my husband about how I had unlimited texting.  He denies such conversation and therefore the jury has found me guilty.  There goes the beginning of my Christmas fund:(  The sad thing is that there are still 8 more days in this billing cycle!!! 

Needless to say, for the next 8 days I am totally grounded from texting and I may just boycott it after that!  I feel like a total teenager.  Such an epic fail at being a texter!  I think I will just go back to that old fashion thing called talking!!! 

Day Three Post Surgery...Turning the Corner

One of the greatest blessings in life is that every day is a new day and a new opportunity for any situation to get better.  Today is our day...I hope! 

I really feel like that the worst is behind us.  All of the prayers have been felt and I am just overwhelmed by everyone who has lifted my boy up in prayer.

After the rough day we had yesterday, we were praying for a great day with lots of improvement.  I mean, I want Tegan to learn how to sit still for at least short periods of time but this isn't the way I wanted it to happen.  In the last few days we have only saw lots of this

Today he is somewhat back to his old self.  He is eating (albeit still very picky), drinking, playing, talking and most importantly he has his eyes open!!!!  He wanted to look at his eyes so I let him but bless his heart he didn't like what he saw.  His eyes are very very red and look very very painful.  The plus is that he doesn't seem to be in any pain today.  He does keep saying that his eyes itch really bad way back on the inside but with eyes that look like his, that isn't so bad.  The itching is most likely coming from all the stitches that are placed in the muscles around his eyes.   We are totally expecting the red to linger for a very long time.  His eyes will probably have a pink tint to them for up to 6 months but at least he can see!!!! 

He insisted that I take a picture of his eyes and show them to him on the computer b/c he says it hurts less to look at them on the computer than in the mirror:)  He is very proud of himself for having his eyes open and so are his parents.  We still can't tell yet if the surgery did what it was suppose to do b/c he keeps tilting his head back and looking down the front of his nose...which is totally not what we want and is way worse than what he did before.  But I think he is only doing that b/c his eyelids are still a little puffy on the inside b/c sometimes I notice he isn't tilting it back.  I still see the eye movement, which is the Nystagmus, but I don't know if you would notice it if you weren't looking for it.  I am looking for it so that is why it stands out to me.  So far, Paul and I haven't seen him tilt his head to the side at all to see.  We were told to expect for his eyes to be pointing totally to the left for the first week until his brain readjust and he pulls them to the right.  They aren't pointing to the left but straight forward.  Of course that is what we want but we don't want them to pull anymore to the right so I am praying that his brain is just ahead of the game and has already done what it is suppose to! 

I am praising God today for the healing and find it to be such a miracle what he can do in just a 10 to 12 hour time span. Red or not...I am so very happy to see his beautiful eyes. 

Day Two Post Surgery

Good grief what a day!  I learned a long time ago that when it comes to my kids (in my belly or not), I should always listen to my gut.  A mother always knows.  I am so very thankful for a Dr. (Dr. Glassman) who listened to me even though I'm not really sure he wasn't convinced that I was just being paranoid. 

Tegan had a very restless nights sleep last night.  I'm sure it doesn't help that him and I are practically sleeping on top of each other in a twin size bed.  This morning he woke up early like always.  I moved him to the couch to "listen" to the TV since he didn't want to open his eyes.  I can't tell you what particular thing triggered my motherly instinct but I just had this funny feeling something wasn't right with him.  From 7 to 9 AM, he was laying on the couch and I sat in the floor right next to him.  I didn't even fix myself breakfast.  I just felt off.  Sometime around 9 I noticed that he was feeling very warm.  I took his temp, he had a fever and I gave him some Tylenol.  I walked away for just a second and he started to vomit.  Not a little vomit but a really big huge vomit that was a little to huge for a kid that had not ate a single thing in 48 hours and was barely drinking.  His shirt was so covered that I couldn't get it over his head without it hitting his eyes so I just gave up, grabbed some scissors and said goodbye to his night shirt.  I cleaned him up, cleaned up my couch, ruined my carpet by cleaning it with something that left a big old bleach spot and then just sat right back down beside him while trying to call the eye Dr.  Of course with a place like Emory, you don't get a real person.  I debated and debated on what to do b/c at this point he was talking a little more and acting better.  Through all this he had yet to open his eyes at all the whole morning and my gut feeling was still lingering.   

Thirty minutes later I quit debating and got him an appointment at the pediatricians office.  His eye Dr./surgeon is over two hours away so I thought it would be best to start local.  Let me just say I love love love my Dr.  He has always trusted my instincts with my kids and today was no different although I almost didn't voice my concern for fear of looking stupid.  Tegan checked out fine physically and didn't look dehydrated at all.  He was thinking this all may be normal for the surgery he has been through.  But then I told him I had a gut feeling and I knew something wasn't right.  That was all he needed to hear.  He got on the phone with the surgeon and came up with a plan to make sure all of our bases were covered. 

He sent us straight to the hospital just to get a blood culture and to get antibiotics by IV just in case this was the start of an eye infection.  In the ten minutes it took me to drive there, park and walk up to the 3rd floor carrying my 41 pound kid, he got way worse.  He was pale, limp and not talking at all.  He looked awful and was impossible to wake up.  The nurses took one look at him and knew he needed some fluids right then.  They didn't even get to let the numbing cream work on his hand before they just had to place the IV.  One bag of fluids and one huge dose of antibiotics by IV later and he was like a new kid.  He was even opening his eyes for the first time...both eyes at the same time!  By opening I don't mean really opening but yet just barely a crack.  You can't even really tell the difference in blood, redness or eye through the tiny crack but atleast he was trying to open them.  There is a huge bulging blood clot on the inside corner of his right eye. 

BUT praise the Lord he can see out of both eyes.  Maybe not all that great through that little crack and all the blood but at least he has vision!!!  I was so thankful to bring my little man home with him talking and wanting to set up...unlike the whole rest of the day. 

I thought today would be a very progressive day but it seemed he took two steps back.  I just pray that tomorrow is the day we need it to be and he shows a significant amount of healing.  I'm anxious to see if all this is worth the end result! If you seen his eyes...you would definitely doubt yourself as a mother.  If it were me, I wouldn't be able to get out of bed. It looks painful and I am feeling very guilty for letting them do this to him!!!  Pray that his Mama doesn't going crazy while you pray for his very quick healing!!!!

SURGERY DAY is OVER!!!!

Sorry for the delay in updating.  Yesterday was a very long day and we were all sound asleep the first chance we had.

First I just have to say that Tegan is a trooper!!!  We went up the night before and stayed in a hotel so that we didn't have to drive a real long distance the next morning.  We were walking in to the Children's Hospital at 6:30 AM.  This was the most efficient hospital I have ever been in (and I work at a hospital so that is saying a lot)! 
Tegan was really brave and very sweet to all the staff that came in to do various things to him in preparation for his surgery.  He did start to get really thirsty and just decide he wanted to go home at around 9:00 AM but they came in at around 9:30 AM and gave him some "Joy Juice" (like a Valium for kids) and he was good to go.  He didn't even cry when they took him from me.  They put him to sleep with a mask and then put in the IV so I was thankful for that.  Surgery started at around 10 AM and they called to say they were finishing up at a few minutes after 12 PM.  He was in recovery for a little while after that and then they finally brought him to us.  I was devastated when they wheeled him in and by the look on Paul's face, I thought he was going to throw up at any minute.  As soon as Teg heard my voice he started to cry.  Not a hard cry but this little painful and heartbreaking cry.  He just kept saying "they stuck two things in my eyes" and "please get this stuff out of my eyes with a paper towel".  He was begging for Paul and I to help but we felt very helpless. 
But like tough little boys do, he started to bounce back.  Now he is by no means OK but his attitude is GREAT!  He has been talking a lot and playing with whatever toys we put within arms reach. 
His eyes have been bleeding since the surgery but that should slow down soon.  I have to constantly clean his eyes and he doesn't like it.  He has just started to barely open one eye.  So for over 24 hours he has just laid there with his eyes closed and refuses to open them.  The eye he is opening looks HORRIBLE.  There is a huge blood clot just sitting in the inside corner of that eye.  Everything is so bloody that I can't really tell which way the eyeball is actually pointing.  He isn't really opening it up enough for me to see it but at least I know he does have vision in that eye which eases one of our fears of the risk of him losing his vision.  He still refuses to open the other eye at all so hopefully that will change very soon.  He isn't really eating anything but he is drinking juice, sprite and "Banilla" milkshakes.  I slept with him last night and he did pretty good except a few times when he would wake suddenly and couldn't get his eyes open, he would start screaming for me not realizing that he was literally screaming in my ear.  Talk about a wake up call. 
He can not touch or rub his eyes at all.  I thought that was going to be hard to prevent but once we told him it would hurt if he touched them, he hasn't even tried.  We have to be very cautious for the next two weeks b/c infection is the biggest risk of this surgery.  The actual surgery was detaching his eyeball from all four muscles and placing those muscle back to his eyeball in a different place.  He has lots of stitches on the sides and backs of his eyeball....so we can't see the stitches but they say he can feel them.  They say that it feels like having sand in your eyes so you can imagine how aggravating that is.  They also say that it feels very tight to him.
Although the surgery went well there is no way to tell if it was a success or not at this point.  We are praying hard that it is b/c I just don't think I can do this to him again.  It is awful.  The point is that he would have to turn his eyes to the right to make them be still so he could see before he had the surgery.  Well this surgery took his eyeballs and turned them to the left.  So when he does open up his eyes, they aren't going to point in the right direction right away but within a few days he will start trying to pull them to the right (like he always has) to be able to see and that is suppose to bring them to the front .  It is scary b/c there is nothing really for her to go by to know where she should place the muscles back.  She just has to do it and pray that they will be right once his brain readjust.  So the next few days he will hopefully start opening his eyes, they will straighten up and his brain will adjust to the new point.  A LOT of scary stuff!!!!  He will be able to function again soon but his eyes will heal from this for 6 to 12 MONTHS!!!  So if she didn't get it right this time and he has to have it done again, it will probably be a year before she can do it again...I'm still unclear on that.  I am worried that what if it works in one eye but not the other and his eyes look really off from each other....which is possible.  There are lots of what ifs with this surgery and we definitely have fear that we will end up feeling like we made the wrong choice.  But we feel like we had to put this in God's hands and do everything we could for our little man.
There are lots of prayers still needed....speedy recovery, for him to open his eyes, the bleeding to stop, no fever, no infection, that his eyes will do what they should at this point, and that he will one day forgive us for this horrible pain and surgery we have put him through! 
Thank you all so much for thinking of us and praying for us.  I know that I could feel the prayers and peace all day yesterday b/c I am normally very anxious but I never got that way at all yesterday.  Please continue to pray for Tegan and lift him up....this surgery is no cake walk!!!

Surgery Day is HERE!!!

Tomorrow we will take our baby boy to the hospital for his first (and hopefully last) eye surgery!  It would be a total understatement to say that I am very very anxious about this.  He will be having it done at the Children's Hospital and should get to come home tomorrow night if all goes well with surgery and being put to sleep. 
He will be under anesthesia for around 2 to 3 hours...that makes me nervous too!  They will completely detach his eyeballs and shift them to a new focus point.  Gross....yes but it is the only way to explain it.  It is a pretty big deal and it hasn't helped me to watch my husband get really nervous about it.  Stuff to him is usually no big deal but this is our baby's eyes we are messing with.
We have researched his Dr. high and low and even gotten a second opinion.  We are at the point where we feel really confident with her and her recommendation for this surgery.  I think I am mostly scared b/c I don't want to watch him be scared.  That and the fact that there is nothing out there (not even in google land) that tells us what to expect post-op b/c it effects everyone differently.  One woman said her son wouldn't even open his eyes at all for FIVE days after the surgery.  The whites of his eyes are expected to be red/pink for several months and we should expect to see some blood pockets form below his eye.  Other than those things...there is no way to predict this surgery.  We have no way of knowing if this surgery will actually help him or even hurt him but we are putting all our faith in the Lord on this one.  I am placing my baby boy in his hands and already praising him for a smooth surgery, quick recovery and a cure for this incurable eye condition!!!!   
Tegan has no idea what is going to happen and I just can't bring myself to tell him.  He thinks we are "Going to pick up his eye surgery". 
We have to be at the hospital at 7:00 AM in the morning and surgery will be around 9:00 or 10:00.  It will be hard to not let him drink anything b/c anyone who knows Tegan knows that he is serious about his orange juice and milk. 
Please say a prayer for my little man tonight and tomorrow (and for his super nervous parents too).  Let's all lift him up!!!!

Grieving a baby...

  This is just the first post of what will be many as I lead up to Cohen's birthday this year.  I have yet to experience some deaths such as losing a parent or sibling (I hope it is a long time before I do) but I know what it is like to lose a grandparent, father-in-law, aunt and cousin. Although those deaths were all hard to deal with, so far nothing has compared to burying my baby. As I am walking through some things the past three weeks I have realized that not many people understand nor do they ever hope to understand what it is like to bury a baby. So tonight I want to give you a glimpse. Just a tiny taste of the immediate reality of a mother of an angel. 
Imagine your heart being taken straight from your chest and put in the ground. The wind is knocked out of you over and over again as you beg for mercy to make it stop. The emptiness is unreal. There is a void there that you fear will forever be part of you. You ache...physically ache to the core. Your arms hurt and long to cling to an infant. You are given a blessing and a curse in this baby daily. You crave him/her. Just one more look at their precious face might get you through but there is no possibility of that. If you are lucky enough to get pictures, those are all you will ever have and they become your greatest treasure. Every single day hurts...even 5 years later. Time keeps going while you stand stuck in quick sand that is so unforgiving. You may think you are having a good day but then something can take you right back to it in a very raw way. Keeping up everyday only happens if you have to. Going out in public takes courage that you have lost. You fear that if someone catches you laughing they may think you are ok. You are not ok.
What most people don't know is that while you are planning the burial of your baby, Mother Nature doesn't cut you any slack. The sight of blood is just a reminder. Your body produces milk as if it is preparing to feed a healthy and alive baby. You have to let your body heal when all you want to do is find a way to make time fly. You can't sleep. Eating isn't at the top of your desire list. Hormones....oh the hormones. Possibly the cruelest of all is that feeling in your stomach...it happens most when you lay down at night. You could swear you just felt your baby move. There it is again and for just a minute you let yourself believe that your baby is still safely tucked away in your belly. This feeling can last several months as things in your body try to go back to normal.
You are peaceful. You are sad. You are angry. The angry stage last a long time. I don't mean that you are just angry at the situation but you become angry that time goes on for everyone else and they are back to life as usual within days while you are left behind broken. You are angry that people don't mention your baby as if he never lived. You are angry that people think you are just ok. The anger last a really long time. Then you go in to survival mode. Then you begin to work backwards through the grief. More anger. More sadness. And at some point you find your peace. Does finding peace mean you aren't sad....no!

Hard to read....I pray you never ever have to live it!!!  Once you feel it, it doesn't take much to take you back to it.  You can never make someone understand these feelings, like really feel them, unless they have lost their own baby.  You are forever incomplete!!!

Wait...What month is it??

Is it just me or is this year FLYING by??  I can't believe we are already in to September but oh so thankful that I have almost survived yet another horribly hot and rain free summer.  I LOVE fall and can't wait to see the leaves changing and feel that cool air.  Of course in Georgia, fall only last for 3 days before it is winter time:)

Life is moving along at such a busy pace.  Things are keeping me so busy that there isn't even much time for facebook....probably just what I needed to break the addiction!  The job has been busy.  I love it but have to admit that I am not as young as I use to be.  All this running up and down the halls of the hospital and working all day without sitting down at all, might just be taking its toll on me b/c tonight my legs, feet, back and even my ribs are hurting.  Crazy I know.  I'm sure once I get a little more use to things that I will be OK. 

Tegan is begging me every night with his sweet little voice to "Pwease not make me go to Cool!".  Unfortunately he must go while I work.  We are preparing for his eye surgery in less than two weeks.  Well not in the actual sense but in the prayer sense!  I am scared and not ashamed to admit it. 

Rylee is doing great and has started gymnastics.  She loves it which makes my heart very happy! 

Boring post I know but there have been lots of other things going on that I just can't wrap my tired little head around tonight.  Things that I may or may not ever be able to put in to words or to even blog about.  Right now I am just thankful for my little family, my job, my house and my little world within these walls!