Reflection

Will I ever feel like me again? Is this the me I'll always be? Worried, afraid , terrified , paranoid, over protective, defensive, wanting to keep my son in a bubble??? How does he feel? Does he feel like he did before the surgery, is he afraid to sleep, is he afraid when I'm not in his view, does he trust me??? 

I know things will get better it will take some time. I relive the day Dr. Park told us Cole had a congenital heart defect. I get taken back to the 6 weeks prior to surgery often in my mind. Memories that haunt me. The fear of the unknown. 

My baby is here with me now. Growing by the day. I sit back and still watch him and pray and pray for more time with him. I pray for other children too and it breaks my heart what others are going through with their little ones. I feel bad at times that my baby came home while there are so many other kids still in the hospital. 

To have someone say they are praying for you is the best gift anyone can give. I never truly felt that someone telling me that was a gift till about 8 weeks ago. I love my relationship I am forming with The Lord. I have learned a lot about myself through my sons on going heart journey. I am becoming a better Christian woman , mother and wife. Life is a blessing take nothing for granted ever. 

For this child I prayed, and the Lord has granted me my petition which I asked of Him. 1 Samuel 1:27

7/17/2013 ~ Cole 2 Months Old 

10 Days Post-Op

Today is Monday and it has been 10 days since Coles OHS. Wow how time flies. 

We are still working with Coles pain levels being pretty high but we are getting his pain meds in tune. Why on earth do they think just tylenol is going to ease his pain. Guess they know better, they are the doctors right ??? 

I called Coles pediatrician today and voiced my concerns about the increasingly bad reflux he is having. The doctor is concerned but with everything you have to start from the bottom and work your way up. So step 1 we change his formula. Cole is now on Alimentum a hypoallergenic formula for food allergies and protein sensitivity. By Wednesday we will know if we are on the right track. We have a GI doctor appointment in our near feature. 

Today I noticed something amazing my son is gaining weight and looks pudgy I LOVE IT. Cole takes 4-5 ounces now every 3 hours.  He looks so healthy and pink and now round. Can't wait to see how much he weighs on Friday at his Cardiolgy appointment.   

Love this 

My handsome growing boy 

Getting chunky I love it 

Peas & Carrots ;-)

Home Sweet Home

So here we are HOME. Couldn't be happier about it either. The car ride from Seattle Children's to home seem like it took forever. Granted there was Seattle traffic we ran into , no surprise there. LOL. Cole was pretty fussy when we got home. Nothing made him happy you could tell he was in pain.  Dylan and I took turns holding , rocking and walking him around. Finally he settled down and slept here and there. 

We have so many alarms set to feed and give meds. Along with him having wicked reflux we have to keep him upright like 24/7 and him needing to be on his wedge. I'm wondering when life will feel normal again or is this my now normal. Doesn't matter anyways I love this little boy and can adjust to what ever he needs of me......... 

Today was Saturday and we just are starting to get into our groove with Cole. We learned some likes today and dislikes. We basically are starting the bonding period all over again.  I kind of wonder if at this time we have to earn Coles trust I only say that because he looks fearful at times especially when I get near his chest scar. Time heals all wounds and we will get there together.  

So far Cole is doing excellent he is eating like a champ 3-4 ounces every 3 hours. He has already grown out of his newborn size clothes. His color is still adjusting and he still loves to sleep. Cole snores just like daddy and yes mommy too. Although I don't think I snore lol but my husband begs to differ. Hehehe   

 How you doin???

He likes to pose for the camera :)

8 day post-op zipper 

First home cooked meal in 8 days thank you cook Dylan 

Cole LOVES to sleep

Day 7 Goodbye Seattle Children's Hello Home

A long day to say the least but all in all Cole was discharged and sent home 

Cole seems to be in tons of pain we may need just more than tylonol for the pain. They are telling me babies are so resilient and bounce back but I know my baby he is in pain. We are all so happy to be home and very exhausted. I won't write much today but I will go back and update this post when I have more energy. 

I can say that the emotions I felt today were more than overwhelming. I completely broke down after the doctors came in to tell us Cole was going home. I had cried after I handed my baby over for surgery and a few other times but never broke until today. Every emotion every fear all the memories of the past 8 weeks just flooded my brain. I couldn't stop crying our nice nurse named Anne rubbed my arm and tried to consul me along with my husband. All I know is I have my baby home and his heart is mended for the time being. 

Our surgeon Dr. McMullen came to say goodbye. As he was leaving out of our room I said hey he turned around and I told him " thank you for fixing my son's heart" he looked at me and smirked and said you're welcome. The look he had in his eyes when I thanked him said everything. 

Will update more but for now here are some pictures. 

Daddy and Cole waiting on the word if we go home. 

My happy boy he heard the good news 

Yes baby we are going home 

Naked face I love it 

Goodbye Seattle Children's

 (don't we look lovely lol) 

               1 in 100 CHD Warrior 

Day 6 Have Faith

What a night our poor Super Cole had. I was frustrated on the out side but crying on the inside for my sweet boy. Dad and I both took turns with Cole last night. As we switched off last night I noticed a huge sunken in spot in his soft spot. We notified the nurses everyone was stumped. We stayed on the feed pump but we were not put on any IV fluids for the dehydration since his labs came back looking great. 

After the hubby brought me some bean juice this morning I was able to be not such a bear. I prayed for strength and apologized for my bad night. We are all human and with little sleep we can all be bears dad included lol. 

This morning consisted of blood draws, EKG , and Echo. The dr did their rounds and GREAT news Coles heart repair looks awesome and so do his tests. Despite our horrible night we now have a plan. Cole can eat as he wants today no pressure. 

Lets just take it one hour at a time and not rush out sweet boy. Here are a few bible verses that are keeping me going today as I lay here reading my bible. 

Blessed be God, which hath not turned away my prayer, nor his mercy from me. ~Psalms 66:20

GOD be merciful unto us, and bless  us; and cause his face to shine upon us. ~Psalms 67:1

Bean juice and a sleeping baby = perfect 

Finally taking the bottle. You go Super Cole. Daddy is thrilled can you tell ??? :)

My Stud Super Cole always smiling to cheer mommy up. Love you hero boy

My boys asleep napping. Sleep well angel 

Just a swingin. Mommy this place is kinda fun sometimes. 

Day 5 Eat Boy Eat

If Cole would eat we may be able to get out of here sooner. Cole must really like it here because until he eats and gains weight we will be right where we're at. I'm thinking about forwarding our mail here hmmmmm.  So since Cole is getting so tired when he eats we now have a NG tube. 

The NG tube took about 3 tries and it wasn't my favorite part of the day at all. I don't think it was Coles favorite part of the day either. The feeds are going good now through the NG I'm exhausted Cole is exhausted. We are both ready for sleep. 

Dylan and I both learned the basics about the NG and I'm not looking forward to putting it in if we get sent home with it. Cole has been a fussy man today and we have raided the toy room here for things to keep him entertained. 

Hoping tomorrow is a better day echo in the morning and praying no more apnea spells tonight. He will sleep on a crazy looking wedge tonight to rule out the cause of apnea being reflux. Also another X-ray in the early AM as today was still hazy. Our goal day to get out of here is Saturday the 13th of July. 

Cole is wiped out after the whole NG thing

Daddy rocking Cole 

The sleeping wedge.  Looks crazy right??

Changing wedge is taking up tons of room in crib

Cole and Mommy.  I'm just so happy to have my baby 

My happy little Giants fan. Even on the not so best of days he can smile.  This boy is my HERO 

Cole has all the fun crib toys here lol

Day 4 ICU Graduate

Cole is officially an ICU graduate. Yay so proud of my boy. I thought at one point we're not ready for this but honestly it was more of I wasn't ready to be out of the ICU. I felt a safety there and the fear of going home with out a nurse or doctor is hindering in the back of my mind. 

Our Super Cole has an o2 reading of 100% how awesome is that. Might I also include he doesn't sleep as much as he did before his surgery. Not to worry he is a cutie so I don't mind him being awake so much. 

Not sure how long we will be here but  I'm sure with all the progress he has made thus far we shouldn't be here long. Cole will be happy to be in mommy a bed and back to being the little prince of the house. 

On a personal note I can't wait to have a home cooked meal as I'm sure my hubby feels the same. The free washers and dryers here are amazing. I'm sure the staff here was thankful we did our laundry lol. Also took full advantage of the showers too. Dylan and I took shifts to look after Cole. So blessed to have Dylan as my husband and my children's Father. 

Mommy and Cole in our new room 

Daddy and Cole in the new room

New bed less wires we love it

No pictures please I'm trying to sleep mommy 

Cole loves this crib toy keeps him very entertained 

Getting stronger by the day. Ready to bust out of this joint soon mommy. 

Day 3 @ Seattle Children's

A day of many accomplishments @ 6am Coles breathing tube test began. In this test the machine is turned off and cole shows what he can do on his own for the next 2 hours they will take the breathing tube out. I'm sitting here literally holding my breath. He flunked the test and pretty much rode the vent till the nurses decided hey buddy enough is enough. At about 2pm his vent was removed. Cole did great without it his voice was raspy and still is but we are so happy the vent is gone. 

Coles chest tube and pacemaker wires have also been removed today. It was a big day of accomplishments. All meds have been turned off as well. Wow no oxygen no meds and word on the street is we bust out of ICU tomorrow morning around 10am. I am happy we are gonna move to the floor but worried at the same time. That means closer to going home and well hello there are no nurses at home. 

Angie from little mended hearts of puget sound came to visit today and brought us a goodie bag. Thank you Angie it brightened up our day to have a visitors. It was my moms birthday today and she was here for most of Coles accomplishments. Here are some pictures of our big day. And more post to come as we will still be here some more days. 

This morning when the breathing test began

Should be the last picture on these machines 

The view from behind the scenes look at all those wires. 

Cole fighting he just had flunked his breathing test. We will try again later after a quick nap. 

No more chest tube or pacemaker wires yay. His zipper is looking mighty fine thank you Dr. McMullen :)

No more vent no more vent 

At last my love has come along. In mommas arms eating and safe where he belongs

Hey this place is kinda nice when you don't have tubes shoved down your throat 

When you loose the tubes you get a bigger bed. SCORE 

Cole sleeping in his big comfy bed and Daddy prouder than ever. 

Miracles really do happen and I know a miracle his name is Cole Anthony 

Day 2 @ Seattle Children's

Today was an emotional day. I'm happy my baby's heart is mended but sad when he looks into my eyes. He has been staring into my eyes like how could I let these people do this to him. I finally cried and had to step away from him. I can't even begin to explain what it feels like to not be able to hold your child only those who have been through this or similar situations know this feeling. It's the absolute definition of torture I can tell you that. 

On to some good news. Coles nitric has been lowered to 4 and his oxygen vent is at 35. Once the nitric is completely off we can then start the ween process of the oxygen level to be lowered at that point we can try to removed the vent completely. Hoping to this early Monday morning around 4 am. 

Feed tube is being used. The feeds have made his tummy extra swollen. We still have a chest tube and pacemaker wires just in case but pacemaker still is not hooked up, yay Cole. IV has been removed from his feet due to his veins blowing that's no surprise. He still has a neck IV and it looks like its holding up. 

Cole is on Milrinone,morphine, heparin, furosemide and some IV fluids. As long as he is on the Milrinone we will not be leaving the ICU. We will get more into that when I have a better understanding of what this medication does. I mean I understand but couldn't explain it as of yet lol.  I'm sleep deprived give me a break lol. 

Now I'm hearing the baby holding may happen Tuesday. Fingers crossed for Tuesday I need my baby in my arms like yesterday. My baby looks so different than when I first handed him over, now he looks older to me. 

Sleeping away last night

This is our view of the amazing hospital where miracles happen

Resting this afternoon. His chest is looking awesome

Close up view

Still have a ton of machines 

Cut back on the pain meds he is a little more alert 

Sleep my sweet boy mommy will hold you soon and never let you go.