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. 

Day 1 Day After Surgery 7/6/13

Let me just say this room is freezing but I am grateful both Dylan and I can stay in the room with Cole. 

Last night started with a leaking in his vent tube but they fixed it. His arterial lines in wrist stopped working and tried for a good hour to put new ones in but no success. Dr this morning said for now we will leave them out. Oxygen levels are up and down between 93-96 but for good chunk of this morning levels were low 90's. 

We have graduated off the pacemaker as of 9 am this morning praying it stays that way. His lower body temp is pretty low not sure why. Cole is still on the ventilator it's set at 40% and the nitric is set at 20% for now. He has a bit of pulmonary hypertension at the moment. His lasikis have been increased to pull that extra fluid he is retaining.  

Still on lots of pain meds and meds he is still mildly sedated. He squeezes my finger when I talk to him and I have his wave sound machine on by his bed. The word on the street I was just told was we will try to removed the vent and chest tube on Monday and possibly I can hold him on Tuesday. If the holding can happen sooner I would be the happiest momma ever. Till then ill wait. 

Dr said he is doing good just need to keep making progress. Here are a few pictures of what Cole looks like today. Thank you to everyone showing us support we are grateful and blessed to have so many people caring and praying for our sweet baby Super Cole 

This was last night 

His sweet swollen face this morning

Resting peacefully 

Can't wait to ditch some of this machines when he is ready. 

Cords tubes wires but still looking handsome to mommy as always

Mommy and Daddy love you sweet boy get better so we can hold you. 

Open Heart Surgery Day

Here are a few pictures. Cole is still fighting hard tomorrow morning we hope some progress is made tomorrow. Till then I just keep telling him how strong he is and how great he is doing and that we love him so much.

I will update more tomorrow 

Day Before Surgery

Ughhh is all I can feel or say right now. I don't think all the meds in the world could change the way I feel at this very moment. Today is 4th of July and fireworks and barbqued foods are the last thing on my mind.

Cole is a cranky boy today but thats fine with me I've been holding him since yesterday. I don't want to put him down and know that I have to hand him over tomorrow. I'm sure any mother in my shoes would feel the anixety I have going on right at this moment.

Just wanted to thank everyone who has shared words of encouragement or has been praying and reading Cole's blog and keep passing his story around. Lets save babies through pulse ox and CHD awarness.

#corasaveslives I've been thanking God everyday for Cole's failed pulse ox test because we have the chance to fix him. God bless all the angel babies who lost their fight to CHD's and to those who did not get pulse ox, may their parents find peace and strength.

Pre-Op @ Seattle Children's

Well today was a roller coaster of a day let me tell you. I started my morning off @ 4 am and got an early start on my way to the hospital. I only live 23 miles from Seattle Children's but let me just say if there is traffic plan on getting there in about 2 hours. Thus is the reason I had to leave 2 1/2 hours before our pre-op appointment. You would never believe how empty the parking lot was @ 6 am because when we left it sure was packed.

First Stop: Echo @ 8 am all went as well as it can when you have a heart baby. They play so awesome Baby Bach music and let you lay with your child while they preform the echo.  I thought that was pretty sweet Dylan laid with Cole during that I thought for sure there would be some snores since the echo took 45 mins. Cole weighed in today @ 8 lbs 5 oz which isn't great considering he was 8 lbs 1oz last Wednesday but like I said before I will take weight gain on him any way I can. Pulse Ox 86 can't wait to see 100%

Second Stop:  Meet with Cole's Surgeon Dr. McMullen I know in the beginning I was told that the surgeon would be Dr. Premut but I guess things change. I can honestly say the moment he walked in the room I was 100% comfortable with my son's heart in this mans hand literately.The Dr did his whole talk and explained things one by one. what to expect what complications we could run into and so on.He did say somethings I wasn't prepared to hear but I'm so glad he didn't hold anything back. I don't want to really want to go into detail about all the complications but as long as Cole can make it to 6 months post-op without any complications of the repair he will be just fine. If he does run into complications with the repair he will have a 50/50 chance of seeing his 1st birthday.   I did well too I didn't cry its like some hard shell over me and I was this different person. At one point I kept looking at his shoes over and over I like to check out peoples shoes kinda gives me an idea about what kind of person they are. Crazy I know LOL anyways he had on some pretty sweet cowboy boots and had them tucked under his dress slacks. Dr. McMullen promised me he would do everything in his power to fix Cole no matter what until he has no more options. I believe this man and that can let me rest easy tonight.

Third Stop: Nurse Practitioner. The NP seemed very nice went over all my day of surgery directions and went over just how the procedure would go and how long it would take. By the way everyone has a different amount of time they say the surgery will take. So I guess we will see how long it takes once we are actually done with the surgery. She gave me some wash to wash his skin where the incision will be made along with directions on how to use it also gave me some ointment for his nose to cut down the amount of bacteria in the nose.

Fourth Stop :Pass clinic basically they just made the okay that Cole was healthy enough for surgery and asked some anesthesia questions and sent me off with some pedialyte.


Last Stop Lab :   Wow 5 vilals of blood all filled from his heel lets just say he wasn't a happy camper


All in all our day was so busy while Dylan and I were going from appointment to appointment I didn't have time to be sad. Let me tell you when you walk out of those doors everything that just happened sets in all the talks all the tests everything. In 2 days I will be handing over my sweet boy alive and breathing the boy who can see my soul each time he stares into my eyes. He looks at me lately with this peace in his eyes that speaks to my heart and says:

"I love you mommy and no matter what I picked you and I will always be your baby."

My Letter to Cole

 My Sweet Baby Boy,

I just want to run away far away and pretend like you are not sick, but would that change anything. I am mad at the world lashing out on anyone who gets in my way. I pray to the Lord everyday to help me understand  and give me the strength to be strong for you. I could spend hours just starring at you and watching you sleep I don't mind holding you 24/7 like I do you are my baby the baby I wished for. No matter how many kids I have I knew I  wanted to have just one more I didn't care what anyone thought. I prayed and prayed for you and wished on shooting stars. It took 2 years and then I found out you were growing inside me.  I was so excited so excited in fact I took 3 tests and sent every picture to daddy while he was at work. I did everything right took extra special care of myself mommy was very sick while you were growing inside of me. Some days I would just sit and cry over how much I loved you and how you were special and meant to be here. At this time I had no idea just how special God had made you. I think Daddy thought I was loosing my marbles LOL. I couldn't explain it and even if I could I don't think anyone would of understood the love I felt while you were growing inside of me.

That morning you were born the whole world stopped everyone in the room disappeared in my mind. You barely even cried you were so beautiful and sweet and the way you looked at me it was if we had met before in some other time. Daddy was so in love with you too and so were you big brothers and big sister. On the day we got that shocking news I was devastated and terrified to loose you. I went over for days asking God why, why God , why my baby , why me? It took about a week and then it came to me a voice said. I was chosen to be your mommy to love you every second of the day with everything I had. To be the best mother I have ever been in all my years of being a mommy. That I could do this and I must look very deep within my self to find the strength to get us all through this. That I must turn to faith and seek out the Lord in your journey. the more I pray and attend worship the more your journey all makes sense. I've learned just how selfish I have been in the past and how there is a bigger picture in life.

 Your surgery is 11 days away to say I'm not afraid would be a lie. I know your doctor can fix you that is not  my fear. I have an uneasy feeling when I think of your recovery. I know I need to be strong for you and not underestimate just how strong you are.  So today I'm saying and believing you are strong, you are my son and I can tell you will fight with everything that you have. I will not cry while I hold you because I refuse for you to feel my weakness or think I don't believe in you. I pray you feel all the love I have for you and wouldn't change that you are my Son for all the riches in the world. I can't wait to hear your laugh see you sit up and crawl to take your first steps and go to your first day of kindergarten to hit your first home run. Every month that passes I am blessed that you picked me to be your mommy.  Just as I whispered in your ear the day you were born

  "I love you as high as the sky and as deep as the oceans that never end."

I love you Cole Anthony.

Love Always,

Mommy

We Have A Surgery Date

Well we have a surgery date July 5th at Seattle Children's . I couldn't be happier or more afraid for my Cole. Our surgeon is Dr. Permut and what I've researched he is amazing. I should have an appointment to meet with him sometime this week.  Cole is now 7 lbs 8 oz !!!! Wooohoooo we've made the goal weight now anything else he gains is an added bonus. 


 My mom is here from California spending time with Cole and helping us out. What a huge blessing it has been having her here. My in laws will be up sometime next week to meet and spend time with Cole and to take the other children to back to California with them while the surgery happens. I am sleeping a little more and Cole sleeps more through the night uninterrupted. I do let him sneak in my bed every so often I have to get my snuggle times in with his as much as I can. 

I have so many fears going on in my head and just need to trust that this is all in the Lords hands. We have another cardiology appointment on June 24th and will find out about the pre-op appointment at that time. 

                            " I will be with you. I will not leave you, nor forsake you."                                                                                ~Joshua 1:5