United Angels Walk

Earlier this summer we attended the United Angels Foundations Walk with Angels.  My main reasoning in going was for Stella to see Rachel from Signing Time.  She has grown up loving the books and DVDs from Baby Signing Time, Signing Time and the new Rachel and the Tree Schoolers preschool program.  It has helped her emensley with her speech and how to put words into sentences.  She also is learning to spell with ASL. Anyways, we are huge Signing Time fans so that's one of the main reasons we went. 

The United Angels Foundation is here to support all special needs kids.  It was an amazing get together and was so kid friendly we all had a blast.  There was bounce houses, snow cones, lunch, face paint, balloon animals, princesses and super heros, a awesome show put on by Rachel. It was so much fun and we will be making this an annual event! 

We got to meet Rachel.  She is so nice and such an amazing woman!

This is Rachel, Jefferson and his buddy Crew.  Crew had heart surgery a couple months before Jefferson did and is also extra lucky with an extra chromosome too!

Stella didn't know what to think, she was a little scared that she was standing in person and not in her TV. 

Finally realizing she's a real person that's holding her! :)

We were the only ones in line so she said come here I have someone I want you to meet.  So we walked over and met the stars of Signing Time, her daughters, Leah and Lucy.  Leah was just a kid when they filmed signing time, now she is all grown up. They were so nice and I was so star struck meeting them! 

Of course we had to sit with Princess Anna and Queen Elsa. 

Go Team Jefferson!

Jeffersons extra special friends Liam and Crew. 

Can't wait till next year!

IHH walk/5k

We joined a foundation when I was 22 weeks pregnant with Jefferson.  We had found out that he had a heart defect and was referred to the support group called Intermountain Healing Hearts. 

1:100 kids are born with a Congenital Heart Defect.  Jefferson is that 1. 

 They came and visited with us after his surgery and the Facebook group has been so much help and has given me much comfort over the past year.  We went to the 5k/walk this year down in West Jordan.  

On our drive down we saw this beautiful double rainbow. 

This was Andrews 2nd 5k he's ever done and he placed 38th out of 120 runners.  

I had to take a picture of the heart shaped sweat mark Andrew had. <3

They had a program after the run where they released butterflies for those sweet kids that lost their lives due to a CHD.  It was so beautiful and I was sobbing watching these beautiful creatures wake up and take flight. 

Stella got to hold one of the butterflies

It was so awesome to be able to support this foundation that has helped me through so much this year.  

Family Photos summer 2014

Thank you to my sister Brooke for her amazing talents to capture my beautiful little family!

Talk about melt your heart to a million pieces!! 

How am I suppose to choose one for my wall?! Man I love my family!!

Day 2 Post OHS

I got a call at 6:30am from our nurse saying that Jefferson woke up on his own and they quickly took the breathing tube out before he got too worked up.  They let him sleep all night and kept the breathing tube in because of his obstructive sleep apnea.  They thought that being on all the meds he wouldn't be able to breath very well on his own.  So we waited till the morning.  But he actually woke up on his own, so we quickly got dressed so we could go see him.
He looked good.  He was still loopy and dopped up on all kinds of pain meds, but he looked so much better with out that breathing tube in.  By then he was not on the sedation medicine and they took him off the blood pressure meds too because he was regulating it himself very well.  But the oxycodone still made him very loopy and lathargic.  So when you looked at him he just had a blank stair.  I wanted so despirately to see that sweet smile again.  After such a traumatic day yesterday, I just wanted to see his smile and to hold him and tell him everything would be ok.

And Wait...

Well,
I am sorry I did not update as the days went by.  But if you can imagine, life was pretty crazy the past week or so.
Going back 5 days to the day of the surgery, we had a pager, and waiting for phone calls while the Drs were literally having my sons heart in their hands.  They called several times:
- When they got all the IV's in
- When they made the first incision
- Got him connected to the bypass machine
- When the repair was complete
- When the surgery was finished

Dr Eckhauser told us not to expect him till about 2:30-3pm, so when we got the call at 12:45pm that the surgery was complete and they were taking him to the CICU (Cardiac ICU) we were shocked.  The surgery was much faster than anticipated, that had to be good right?

About 1:30pm Dr Eckhauser came out and told us how the surgery went.  He said the surgery went great.  He used a tightly woven plastic and gortex patch to close up the big hole in the bottom of the heart.  Then he stitched up the hole in the top part of the heart, and while in there he said he found a 2nd hole in the upper chamber and closed that too.  He also put a stitch in his PDA valve that was still open.  Then he found the center of his heart and made a septum by basically sewing his heart in half.. I guess, I am no surgeon or cardiologist, but thats how I understand what he told us.  But he said everything went great.

Next we were taken back to see our sweet son.  I was shaking.  I knew he was going to be hooked to a whole bunch of wires and tubes, but I wasn't prepared to see my son that way.

He had a tube down his throat and he was on all kinds of IV's and medicine to keep him sedated and calm.  I had to stay outside the room and peek around the curtain.  I was terrified.  I broke down, how can you handle seeing your baby like this?  He was still coming off all of the anestithia and it was a terrifying sight.  He was still asleep but all of his muscles were firing and he was shaking his arms and legs and jolting his body around.  It was the scariest thing I have every seen.  That made it so hard to actually go into the room and see him.  That was probably the hardest part about the entire day.  Handing him off I knew he was in good hands and was going to be fixed so he could breathe better.  Here seeing his body with a rise and fall of the chest, but otherwise lifeless jolting and thrashing and he had no control over it.  But I think it hurt me more than it hurt him.
Thank goodness for Andrew, he was my rock.  He was there by his side for the first couple of days.  I couldn't stomach it.  I tried holding him after they took his vent tube out and he was choking on the mucus that was stuck in his throat and I was freaking out and I saw his eyes get big and he started to freak out too.  It was better for the both of us if I didn't hold him till he wasn't so fragile.  I do not do well with needles or pain, so to see my baby like this just about killed me.  I wasn't able to nurse him for about 3 days till they took his chest tube out.  I tried and he was so uncomfortable and was thrashing and wiggling because he was in pain. So I decided to let him heal and I would just become better friends with a pump.  yay..

I am so glad that the surgery went well and that he is breathing!  Now to make sure he comes off the anesthesia and pray he didn't have a stroke while sedated.

Where is a Xanax when you need one?

The dreaded day is here.  I have been worrying about this day for almost a year now and I am just ready to be past it.  Can it be summer already so we can be all healed and just play?

  We have to get past this little hurdle first, the hurdle of open heart surgery.  I write this as I sit waiting for a play by play from the nurses and Drs that literally have my sons heart in their hands.  We are 3 hours into the surgery and my stomach is still in knots.  I feel like a 20lb weight is anchored to my chest and it is making it hard to breathe let alone try to be calm.  

   It has been a long day, and it is not even close to being half over.  The day began at 3 am when I needed to feed Jefferson so he was not so dehydrated for the surgery, so they could get his IV in.  I got his belly full and he decided it was time to wake up, and I couldn't go back to sleep I was already a nervous wreck.  So I did some laundry, let the dog out, finished packing, then decided to get ready for the day.  Jefferson finally decided to go back to sleep as we drove to the hospital.  We had to be there by 6am and surgery was scheduled to start at 7:30.  Everything went great, meeting with all of the Drs and nurses.  We have Dr Hannon for the anesthesiologist and Dr Eckhauser for our surgeon,  I was a big mess when they came to talk to us so it is all a big blur.  They told us everything that was going to happen and then all of the risks.  I'm just glad Drew was there to actually listen to them.  I was shaking like a leaf and crying when Dr Hannon started talking about the anesthesia that goes into his neck. That is how my great aunt died, from a bubble in the line causing a stroke and she was pretty much brain dead while they did the surgery.  That scares the crap out of me. 

   We were all done talking and then it was time to walk down the dreaded hall and give my baby off to Dr Hannon.  Man was that is probably one of the hardest things I have ever had to do in my entire life.  Although, the next kid that walked down the dreaded hall way was screaming for his mommy the whole way, I think that would have been much harder if Jefferson was calling for me.  Jefferson was being his normal happy/whine I'm hungry cry so it made it a little bit easier.  He doesn't cry very often so it breaks my heart into a million pieces when he does cry.

   We got to the end of the hall and I kissed my sweet boy all over and handed him off to the anestethiologist.  It was extremely hard! Now we just had to wait for the first phone call.  

  The surgical waiting room is a joke! I was a mess emotionally and they expected me to sit in a room crowded with people talking and laughing. Yah right!  The lady at the desk was nice enough to let us sit down at the end if the hall away from the chaos.  I had total anxiety being in that room full of people.  Thank goodness the office ladies were super nice! Now we wait..

I cannot wait..

- Till my sweet baby can breathe easier.  He has to work so hard just to keep breathing it kills me. 

-  till he has some color and doesn't look pale and have purple eye lids.

- Till his legs and arms are warm.  Right now they are always cold to the touch because of his poor circulation.

- Till he doesn't have a head bob when he breathes. 

- Till the day he doesn't have to wear oxygen any more.  He has started pulling it off every chance he gets.

I just want him to be healthy and happy so he can live a full life with out heart complications or being tethered to a tank or monitor. 

Is that too much to ask?

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?