Just keep swimming

That's what I keep telling myself.  I am trying to keep super busy so I don't have time to think about what is going to happen in 5 more days.  The days just keep flying by and that surgery just keeps getting closer and closer.  I am dowsing myself in Doterra oils to try and calm my nerves, but my stomach tightens to the point that I feel like I'm going to vomit, when I think about what is to come.

   I keep having these dark thoughts that I try and push out of my head, but they keep creeping in.  What if something goes wrong?  I know he will be fine, but I always seem to ask myself 'what if?'  I wanted to get everything done before his surgery, just in case. I got his birth announcements done, we blessed him last weekend and I am trying to kiss and love on him every chance I get.

We were able to go to the temple a few weekends ago.  It was nice to feel the spirit so strong it felt like I was being wrapped in a big hug.  It made it all tho more special to have my parents and 2 of my siblings and their spouses there. I just pray the spirit stays strong the next couple of weeks to comfort me. 

  It's going to break me into a million pieces to hand him off to the anestithioligist.  Then it's going to shatter again when I see him for the first time after surgery with cords and tubes coming from every limb and chest.  I know it's what he needs, I just hate that he has to go through it.  I know they will manage his pain well, but it still breaks my heart! It's depressing to think about, I just need to be focusing more on the outcome.  Man I cannot wait to get this over with! 

Sedated Echo

We were scheduled to have a sedated echo on the 13th of March.  They needed him still so they could get good pictures for the surgery. 

  They called me the day before and told me not to feed him after 3am.  Since he sleeps through the night that meant he wouldn't get anything from about 11pm the night before till after he woke up from the echo.  So I did as they said and went in an hour before the scheduled echo so that they could sedate him. Once we got there and into the room, Jefferson was pissed. I tried everything to call him down but he was just so hungry.  

Finally the IV team came. He was already crying from being hungry then having his arm tied down just pissed him off more.  Then she poked him in both arms and couldn't get the iv set.  Then the other girl tried his foot. That's when I had to walk out.  I couldn't handle his screaming bloody murder while they wiggled and poked his little limbs.  

It was just me and Stella there, so I tried my hardest to try and be tough, but I couldn't, I broke down.  All I wanted to do was hold my baby and comfort him, but I couldn't do anything to help him.  I kissed him, held his hand, tried to console him but he was just pissed.  Finally after 3 attempts they backed off.  I understand the reasoning to make them fast, but if they are breasted babies, the milk is digested so much quicker than formula, so I don't understand why they need to make him fast for 7 hours.  I found out after the fact that when you are dehydrated your veins shrink.  So no duh it was hard for the IV team to get a needle in him they were just fishing around going right through his veins.

  The RN came in and I suggested to just let me feed him and then let him sleep on his own.  He has a routine in the mornings he wakes up, eats and then takes a nap for a hour or so.  She kept telling me, well if he's not still then we will have to reschedule another time for him to be sedated.  But she let me try it.  I know my baby and I knew he would pass out after I fed him.  He was exhausted from crying and just famished.  

   They took us back to the echo room and closed the curtain.  I nursed him and he passed out.  I set him on the table and let the lady do her job.  He jostled a little when she put the gel on him, but he went right back to sleep.  He slept through the whole thing!  The sonographer went and talked to Dr Pinto to see if she had scanned everything that needed to be scanned and she said Yup!!  That meant that we did not have to go back and try again! 

  Ugh it was horrible!  I know we will have to try the sedated echo again after his surgery, but man that sucked.  I felt a little bit better when they told me that they will give him gas to make him go to sleep before his surgery so they can put the IV in while he is asleep and not screaming.  Plus I won't be there for that part so hopefully it will be easier on both of us.  

Only a few more days till his surgery, I'm shaking just thinking about it.  I wish I could take a Xanax right about now! 

    On a brighter note, I finally got birth announcements made for Jefferson. They turned out pretty cute! 

Surgery scheduled

Jefferson is growing up too fast.  He is 4 months old already and his surgery is coming up too fast.  I have been worrying about this for almost a year, but I'm just ready to get it over with.  I'm trying my hardest not to stress out about it too much, but it's so hard.  I have a Facebook friend that has a Down Syndrome son that had the exact CHD as Jefferson and he just had surgery 4 weeks ago.  It's nice to have someone to talk to that has gone through the exact same experience.  I'm still terrified.  

I am trying to keep myself busy so I don't have time to think about it.  But time is flying too fast and it will be here sooner than I will have time to not worry. 

Surgery is in 9 more days, on March 25th.  

I know everything will be ok.  I just hate the fact that my baby has to go through this.  He is tough and such an amazing happy kid I just hope this surgery doesn't change him.  And I hope he continues to keep growing!  He is 11 lbs 6oz!  

I love him so much it hurts.  I cannot wait to have him fixed and feeling better.  I cannot wait till he can breathe normal and not like he is running a marathon all the time (his heart rate is usually about 150bpm).  I just pray dr Eckhauser will be patient and make the right decisions for him in surgery and for recovery.  He does these kinds of surgeries all the time.  

These last 9 days are going to fly, let's just get this over with already!!

His beautiful chest before he will have a scar on it for the rest of his life

He sure does love his momma, but not as much as I love him! 

2 months!!

My cute little dude turnes 2 months old today!!  He is growing up too fast!! 

Just in the past week or so he has started smiling, and just today, he smiles back when you smile or rub his cheeks. 

Just a few things that I love about this cute dude:

• His adorable hair.  You try to comb it down and it sticks right back up. 

• He is just like his sister and kicks his socks off every chance he gets. 

• His eyes are BLUE!!  I love my blue eyes kids!! 

• He gets the hiccups just about every time after he eats.  

• He is so ticklish we in just about every part of his body.

• He doesn't like to be tickled.

• He loves to hold onto my hair

• Oh his smile!  I just cannot get enough of that toungy grin!! 

• He still sleeps 9+ hours every single night!! 

• He grunts when he is waking up and when he is hungry. He never cries unless he is starving! 

 

He gets his next round of synergis shot next week, so then we will find out how much he has grown in a month. 

We cannot get enough of this handsome dude!! 

My 7 week old

Jefferson is doing amazig everyone.  He has been off of oxygen for several weeks now!!  YAY!!! I know it's only one more bag to carry around to dr appts, but that is one less bag, one less cord, and one less thing causing him pain when we have to pull the tape off his face every day.

Just seeing this breaks my heart!  He is so tough, he doesn't ever cry, but this cannot feel good! 

So yes, no more oxygen, having to pull the cannula away when he sats high, and no more stinking tape!!  It's a huge giant step for him!  I'm so proud of him! 

Another thing that is so amazing about him, he sleeps a good 10-11 hours straight every night.  What 7 week old baby sleeps through the night?  My stud does!  He is amazing and just as perfect as ever!  

I love this onsie, reminds me of his daddy's awesome Jeep, that I cannot wait for him to ride in.  I cannot wait to see his excitement out of getting to ride in Dads truck, like Stella does, some day.  It's adorable! 

He's just adorable! 

Grieving continued..

I found this article off Facebook and I thought it was just wonderful!  This is almost identical to how I felt.

http://liveactionnews.org/doctor-tells-expectant-parents-of-baby-with-down-syndrome-that-they-are-a-lucky-couple/

Grieving .. Huh?

I have talked and met many new wonderful friends now that we have joined a new family, the Down syndrome family.  I have read and heard that many parents were depressed and cried for days after they found out their child had DS.  I am right in the middle of a book, "Babies with Down Syndrome," and I am only in chapter 2 and I feel horrible.  I feel horrible for all of those people whom have cried and been so depressed over their baby.  I don't quite understand how could one be sad about a beautiful baby that you carried for 9 months, prepared a nursery, possibly had baby showers, filled the drawers full of clothes and blankets; then go through the difficult task of giving birth to that sweet baby.  Don't get me wrong, I grieved, for a totally of probably an hour.  It is a pure blessing to be given a child.  How could you be sad about that. I understand that they might not be your ideal child, have full potential, go to college, get married, have kids, etc.    But they are still your sweet innocent angel.

Probably the one thing that felt like a huge jab to my chest, was when I found out that male DS kids are infertile.  That was hard to read.  I had to take a minute to breathe after that.  But then I got to thinking, all these trials, his disabilities, his health issues that he will have to go through throughout his life, they are only temporary.  He will be perfect in the next life.  It is only temporary. 

He was sent to us for a reason.  For that I do not know, but am eternally grateful for the opportunity.  I still cannot understand why their has to be a lable.  I know he is extra special and has an extra chromosome, but he is just a baby.  A super cute baby that eat, sleeps, poops, is starting to coo and smile at you.  I cannot get enough of his cuteness.  He is just a baby and seems absolutely normal to me.  Just like any other child, he is no different.  I just am so madly in love with this stud muffin and I will take him any way I can get him!!  How could anyone grieve, or feel the need to grieve, when you get to look at this face all day?