Reflection

I am feeling very mixed feelings right now.  Even though I know that it is common for first time pregnancies to go past their due date I still can't help but feel a slight disappointment at going past that date the doctors gave me.  I am big, very few of my clothes fit, I am in constant pain, I am exhausted all the time, my heartburn is out of hand, and sometimes I literally can't move.  So it might be surprising when I say that each of these 9 days past my due date have been such a gift.  

I know that I am going to miss this experience so much.  I've felt so grateful to have this adventure.  I rub my belly all the time, trying to guess which body part I am caressing.  Lately, the evenings have been my favorite time of day because the baby is so active.  My stomach moves in waves and I just sit and stare at the wonder that my body has created.  The movements are powerful and I am desperate to remember how it feels to have this baby inside of me.

I stand in front of the mirror and stare at myself trying desperately to burn the image of my pregnant body into my memory.  It is still something so surreal and beautiful for me to see and I know that the second I give birth to this miracle that image will be gone.  I am proud of the 50 pounds I have gained . I am proud of the ability my body has to change according to the needs of my growing baby.    

I am now 9 days over due.  If this baby doesn't make its arrival before 10AM tomorrow morning it is to the hospital for me.  It has been a highly emotional day for me.  Knowing that these are the last hours that I will have this baby inside of me makes me really sad, and yet I am SO excited to meet this little one.  I can't wait to know if I will be holding a little boy or a little girl in my arms.

Ultimately I have to say that I am unbelievably grateful for this experience.  The pregnancy hasn't been the easiest or the most difficult I have ever heard of, but it has been my experience.  I treasure every moment I have experienced, good and bad.  It has all been worth it to be able to have this opportunity to bring this little life into the world.  I very much look forward to what tomorrow will bring.

Wish me luck.      

Growing Pains

Meet Evan.  Evan has Spinal Muscular Atrophy.  This disease poses many challenges to say the least.  At the beginning of the journey the learning curve is huge, and then it gets easier as most of the "routine" or the daily concerns become second nature.  The challenges don't disappear, but they just become a part of your every day life.  Life seems normal until a new challenge rears its ugly head and you feel like you are back to square one.

Right now I am back to square one and to be honest I don't know how well I am handling this current test.  Evan has never been a natural eater.  Since he developed a mind of his own he has fought food.  The problem is that medically he is not supposed to go more than 3-4 hours without eating something.  Evan's deteriorating muscles need the constant energy that the food provides and it is vital that his body gets the nourishment.

Evan had basically gotten to the point that he would not even really take a bite unless he was told to several times.  Meal times were brutal!  When he was sick he wouldn't even do that and he would go on a food strike, which is why we ultimately made the decision to give him a feeding tube.  We felt better knowing that we had a back up plan for those scary times.  We also felt he would have more energy to make it through school if he was being supplementally fed while he slept.

The feeding tube changed so much!!!!  Evan was starting to grow better, he had more energy at school, and he was all over handling his busier schedule better.  Life seemed to be improving by leaps and bounds.

Then Evan had a bad week.  It was a week that his school was short on EA's and there wasn't anyone there at lunch to remind him to eat or drink.  He didn't eat anything at school and totally broke down.  He was so affected and it continued for a couple of days.  I realized that we still had a problem.  After a phone call to a good friend (another SMA mommy), and too many tears to count I knew we needed to make a yet another change.

Our goal is always for our children to be as independent as they are able to be.  For years food has been the only thing that Evan was able to 100% control in his life and he was going to continue that, even if it meant battling for it.  After talking to the food specialists at the hospital we have formulated a plan that in my gut I know is the right move, but just might kill me in the process.  As was pointed out to me, Evan had never been allowed to feel the effects of hunger.  I would never let him get to that point because of the fact that he has SMA.

In a small nutshell, Evan is now 100% in charge of his eating.  Essentially we treat him almost like every other kid in the world and if he chooses not to eat in the time frame he has been given he is supposed to feel those negative effects of hunger.  We will supplement through the evening as needed, and he needs to follow his rules or there are consequences, but we are to be careful giving negative and positive feed back.

Evan is a very very smart kid and knows what he is supposed to do, but he is being very stubborn through this process.  I cry multiple times daily.  The hardest part is watching your child make choices that hurt him, and could potentially hurt him in very severe ways, all the while knowing that he needs to go through the process to become his best self.  I am glad that I have the support of the specialists at the hospital, friends, and my faith but it is still really hard.  I'm not sure I like growing pains.            

Happy Down Syndrome awareness day

It is Down Syndrome awareness day and I feel it only appropriate to pay a little tribute to a special man in my life.  Cameron's birth and journey to our family was a very special one filled with miracles.  I call him my perfect child because so far, that is exactly what he has been.  Even with all of his medical issues (and there were a lot!) Cameron was hands down my easiest baby.  Cameron has a fighting spirit.  He blew us all away with his strength through his heart surgery and other tests along the way and since.

Since getting a little older his personality has started to develop.  He knows what he wants and doesn't want but does not yet have the language to express it so we work on that daily.  He has worked very hard on his mobility.  He can't traditional crawl but he army crawls like a champion, sits, and pulls up to his knees beautifully.  His team of early intervention workers is amazing and really care about him and his ability to succeed.

Cameron exudes love!  He is a cuddle ball and happy all the time.  I love watching him play with his brothers and he thinks it is pretty darn awesome when they spend time with him.  His face always lights up even more when he is around them, but he is %100 a Mama's boy.  I am his favorite person on the planet!  This makes me so happy because the other two would prefer Dad to me.  I get it too.  Justin is fun fun fun all the time, he isn't the main disciplinarian because he is at work during the day and he lets them play video games with him on Saturday mornings.  Who wouldn't prefer hanging
out with someone that fun? Don't get me wrong they will always choose me when they are sick or hurt, but as far as every day stuff they want their Dad, but not my Cameron boy.  He doesn't even care what we are doing he just wants to be with me and I LOVE IT!

This beautiful child, who happens to have Down Syndrome has changed our life for good and not one of us could imagine life without him.      

Happy Down Syndrome awareness day!!!

pregnancy

I know this is not a surprise to anyone who has been pregnant or been around someone who is pregnant, but growing a person is hard.  There have been some unexpected ups and downs.  How any pregnant woman continues to exercise, let alone walk is beyond me.  It takes all my will not to waddle in public.  The waddle, I have found, isn't because I have lost my center of gravity but because of constant pain in multiple parts of my body that you can't do anything about.  There are so many other things too, severe heart burn, dizzy spells, insomnia, too frequent urination, severe constipation, and the fact that anytime I sneeze I pee my pants are all little unwelcomed gifts from this growing person inside me.  

AND THEN I FEEL THE BABY MOVE.

When this life inside me moves (and it does often) I feel the heavens open.  I can't believe that God has given me the gift of creating a life.  I get to carry a baby.  It's almost like my personal secret.  I go through the day literally having personal conversations with this new baby.  The little one inside of me will rock, kick, or roll and I reach down and caress them back.  We are in our own little world that often times others around aren't even aware of.  It is a dream come true.  These experiences bring a new aspect to my relationship and thoughts of my other children as well.  I am now able to imagine them having the same experience with their tummy mommy's and how special that time was for them to have with these beautiful babies.  I always knew it in my mind, but now I can physically imagine it.   

My body has changed so much.  It is pretty incredible to see and I will sometimes walk by a mirror and be surprised at how big I am.  I was looking through pictures of a beach day we had last year and could hardly believe the difference between myself then and myself now.  My weight gain doesn't bother me.  I know that I am changing to give this baby the best chance at a healthy life and I love that I get to play such an active part in taking care of this life already.    

We are all so excited for this baby to join our family.  It is funny to see the boys reactions day to day about it.  Evan is excited, but I think at this point its kind've old news for him.  I feel bad because I think this is in part because he is in school all day and because he is in a wheelchair.  He is gone a lot of the day so he doesn't have as many chances at feeling the baby move inside of me and when he is home it is hard to get him into a position quick enough that he could feel it.  During church this week we were having some cuddle time and the baby was moving like crazy.  It kept kicking Evan and for the first time Evan seemed totally into it all.  I am so grateful that he got to have that experience.  Landon is by far the most excited one in the family.  He was asking every single day how long until Easter (because he knows that's when the baby is due).  I finally made him a calendar so he can now mark off everyday and see for himself when the baby might come.  Cameron has zero idea that he is going to be a big brother in 5 1/2 weeks.  As for Justin and I we are trying to soak up every last bit of this pregnancy, good and bad.  We know this is it for our family, which makes me sad.  Still I mostly just feel an overwhelming love for my Heavenly Father and the path that he laid out for me.  It isn't always an easy road, but it is my road and I am so grateful for the journey thus far.  

family time

Our Christmas vacation was a beautiful whirlwind full of emotions!  Since, as always I am so late getting this out, I am going to touch on the highlights of the vacation.

I love Christmas!  I am one of those die hard, sappy, emotional about everything Christmas people.  I love the decorations, I love the food, I love the sugar, I love the presents, but by far the thing that I love the most is the family-time that Christmas brings.  The kids are on school break.  My handsome hubby is on vacation from work.  Extended family sacrifices and flies to one place just to be together.  I love it!!!  I would give up the decorations, food, and everything else just to have those moments with my family.

I adore watching my kids interact with their aunties, uncles, and grandparents.  They relish in the time that they get to spend with these special people in their lives.  They talk about them when we are away from them.  

By far the best part about my break this year was spending time with my sisters.  They each chose to stay in the house, which meant that I got to spend time with them and their fabulous husbands.  I didn't have the opportunity growing up to spend a whole lot of time with them.  I am so much older than both of them that by the time I left for college they were still pretty young.  It was (and is always) so fun to stay up late together, cuddle on the couch, sunbathe in the yard or at the beach, do each others nails... I just love them, and I feel like every time I get to see them we just get closer.

Now since I usually have 1-2 kids on my hips I don't get to take a whole lot of great pictures.  Thankfully Alycia DOES take lots of pictures and I swiped some of hers!  Thanks Alycia!!!

 

Evan's surgery

I had written this before we left on our Christmas vacation and just never got it posted.

(don't know how I missed that one!)  Anyway, here is how our surgical experience went down.

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Evan has never been a big eater and I have dreaded and stressed over every calorie his tiny little body has consumed in the last 5 years or so.  After about a year of research and stress we made the decision that Evan should have a feeding tube.  He will be required to continue to follow all of his "food rules" and we will be supplementing his feeding at night while he is sleeping.

When we first made the decision he was quite distressed by it, and eventually he just became resigned to it.  I know he wasn't thrilled, but he knew it had to happen so he didn't fight it anymore.  We are hoping to accomplish a couple things with this new adventure.

1)We hope that Evan will start to grow better than he has in the past.
2)We hope that the night time feedings will boost his energy during the day.
3)We now have a back up plan for feeding when Evan is sick and goes on a food strike.

The surgery was the first one of the day so we left our house at 5:30AM.  Having that time alone with Justin and Evan was such a beautiful thing for me.  I needed Justin's strength to hold it together (I don't like knowing that my baby is going to feel pain) and I just needed to hold my Evan as much as I could.

By the day of surgery Evan wasn't as afraid of the procedure because he had decided that he would be able to stay awake.  He told the anesthesiologist that he was going to have a competition with him and didn't think that he would be able to get him to go to sleep.  (hint: Evan lost that competition, but scored points for effort).

They let me take Evan back to the operation room.  I laid him on the operation table and started to sing him to sleep.  Evan was true to his word and he did put up a fight.  I held one hand and a nurse held his other hand.  As I was coming to the conclusion of the second verse Evan took his hand away from the nurse and reached up, touching my face as he peacefully went to sleep.  I hardly finished the song because I was crying and I left my angel in the care of his doctors.

Thankfully the surgery wasn't very long and after an hour we received word that everything had gone text book perfect.  We saw him a half an hour after that.  Watching him try to recover from the anesthesia was brutal for this parent to watch.  He was in a ton of pain and nothing really settled him.  Finally they were able to get his pain under control and he started to come to his senses.

It took a while to get a room, but we didn't have to go to ICU which is what the original plan was.  We stayed in the hospital for 3 days and came home.  Evan gets better every day and is now even showing an interest in doing his own care for the surgical sites.  I know this was just a minor surgery, but it is still surgery and I am so grateful that Evan came out of it alright.  We look forward to the exciting prospects that this tube might offer to help Evan through his day to day.

it was a long day for all of us ... and yes, Justin is actually sleeping!!!

after a whole day of fasting Evan finally gets to have a popsicle!

Home Depot came and did a project with the kids.  Evan had just lost his IV and was thrilled to go without having to be hooked up to a machine.

the kid who doesn't eat very much was soooo excited to have his first real food the next day!

a special visitor came!!!

and he had EXACTLY what Evan requested for a present.

The brothers came with daddy for a movie night ... everyone but me and the baby fell asleep.

Evan got a "bath" before we went home :0)

TUMMY BEFORE AND AFTER