Lucile Packard Patient Now

Cole's birthday has gone and past but not with out him getting the flu first.  We are now back in our home town in California and have a new cardiologist at a new hospital Lucile Packard Children's Hospital. We are very excited for this change and love love love our new cardiologist his name is  Dr. Rajesh Punn. Cole's first visit to him was Tuesday 5/20/14 we arrived very early to ensure we didn't miss our appointment.

Cole's echo showed many great things one of which I HAD NO IDEA WAS STILL A PROBLEM. Our new card informed us that from Cole's medical records it states that his ASD was repaired along with the TAPVR but that there was still a residual hole. Nice we thought the hole had been closed I'm wondering why are last card decided that I should not know that my son still had a small hole in his heart. Jan Cole had an echo and the hole in the notes stated that the hole was closing so on Tuesday Dr. Punn confirmed that the hole is completely closed now. You can only imagine how furious I was after finding this out.

Cole's repair is healing beautifully but he is still having his low oxygen spells accompanied with grayish blue skin about twice a week. All the Dr. can think that is causing these spells could be an arrhythmia so Cole was sent home with a halter monitor and a 30 event monitor to record these spells. If in fact this is not heart related we will be referred out to a few more specialists to determine the cause. I am so happy to be getting the medical care we are now that we are at a place where my voice for my son and someone will listen to me. Not to talk bad about past physicians Cole has had but because they had a MD in front of their names they could care less what I had to say to a point. They treated me like a crazy overreacting mom. Well this mom is right something is going on with her sweet boy and Lucile Packard Children's Hospital will be the ones to figure out the cause.




Cole is happy and trying to walk he is growing and we couldn't be happier for the gifts the Lord has  blessed us with. I at one point never thought of Cole walking or getting into mischief yes Cole can be a trouble maker at times and I love it.

The Night of Cole's 1st Birthday @ Stanford's Pediatric Emergency Department

Mr. Cole Waiting Cardiology Appointment 

Happy 1st Birthday My Little Love

My Darling Cole Anthony,

Today is your 1st birthday. I can not even believe how fast this roller coaster of a year has went. I want you to know a few things.

You had my heart from the moment I seen your tiny heart beating on that screen. The Dr. couldn't believe how a 6 week fetus could have such a strong heart beat that would show up on the screen. My biggest fear from day 1 of finding out I was pregnant was to loose you. So when I seen your tiny heart pumping I was over joyed.

I went through lots during my pregnancy with you I was on bed rest for at least 2 months due to being preeclamtic Weekly special injections formulated at a hospital to keep you from being born early along with a special diet from gestational diabetes. I went to the Dr. 2 times a week to be monitored and have ultrasounds of you blood being taken from me. At one point I wasn't even sure if I would get to meet you. I would tell Daddy I was in so much pain that I felt like I was going to die. I would sit and cry and say how much I loved you

The day you were born we had some scares, mommy was admitted as an emergency induction as I developed preeclampsia mommy's blood pressure was very high along with my heart rate 139. My labor went pretty smooth although  your heart rate dipped down very low 2 times and the nurses said it was time to get you out NOW!! At that very time I heard a voice in my left ear whisper I love you I pushed a few times and you were born.

When you came out they laid you on my chest and you looked up at me. Not a cry or whimper from your precious little lips just calmness. You were small 6 lbs. 5oz 17 in long. Daddy and I were in love the moment we laid eyes on you. You looked like a mix between Gavin and Matthew and now Daddy had 3 boys his face was priceless.

 The next day when were getting discharged from the hospital sure didn't go as planed and when the Dr. told me about your special heart my world stopped. I had never been more scared in all of my life of loosing someone I just had met. To think about that day stick makes my heart sink to the pit of my stomach. To watch Daddy completely shut down as we held each other takes my breathe away we both felt so lost words could never begin to explain what we felt the tears alone were enough. We prayed cried and looked at your little face and it eased the pain of the journey we were about to face together.

You will always be my special boy. You amaze me everyday and surpass my every expectation. God hand picked you for me entrusting I would be able to take on this special job of being your mommy. You were born with a broken heart but to me your perfect in every way . Your smile lights up the darkest day and your little laugh brightens my life with each giggle.

You have more determination than I've ever witnessed in such a little guy, you're always striving to do more and prove you are here on this earth to do something great. You're my super hero my angel sent from above the baby I prayed for day and night.
You're my precious boy, my inspiration my strive to not give up and always keep going.

 I thank you for opening my life up to Jesus to become a better person for you daddy and all your siblings. You are the reason I do some many things. I no longer take life for granted and view it oh so preciously.

I can now stop to smell the flowers or watch the beauty in the sky your journey has taught me to know that there are more important things happening in life than the little things we let bother us daily. You've taught me patience when I've wanted to give up the hope that tomorrow will bring a new day and brighter skies. The trust in The Lord that prayers are answered in ways I sometimes don't understand.

  You've been through more in you short time on this earth than most people ever experience in a life time.

 I  want you to always be proud of your scars because they tell your special story that is your journey and no one can ever take that from you. you're such a fighter you continue to fight this disease everyday.

I love you my baby boy my fighter my heart and soul my happy boy with a determined heart.

Happy Birthday my little love