2 weeks strong

May 29th Cole is almost 2 weeks old. The days are going by so fast. I wish I could freeze time with my baby boy in my arms.  I feel like I just need more hours with him the 24 hours I do get just aren't enough. Cole has his first cardiologist appointment June 4th I'm nervous how the appointment will go. As of now Cole sleeps a lot basically all day he wakes to eat and get his butt changed. He falls asleep during feedings. This whole situation breaks my heart. I just have to have faith keep praying and trust that what ever will happen is in the hands of the Lord. Easier said than done. I often sit in silence with Cole studying every breath he breathes every hair on his head. I try to imprint in my mind every frown and smile he makes. I sometimes rush to his crib in the middle of the night to see if he is breathing terrified to find him lifeless. As I hold him in my arms I break down and feel helpless. I love my baby more than I could ever explain. For now he is home, growing, happy and peaceful. He is not in pain and doesn't bare a scar on his chest yet.

Total Anomalous Pulmonary Venous Return with Atrial Septal Defect

May 16th I was 38 weeks pregnant. I was so happy to make it this far in the pregnancy it was a long hard road but I did it with the help of  26 weeks of weekly injections, weekly appointments with ultrasounds along with NST monitoring. That morning I had received a call from my Doctor she told me my test results were and I was developing preeclampsia, she advised me to go straight to L&D to be induced.

I called my husband Dylan at work and got the children situated my 16 year 
daughter was to care for my 5 and 3 year old sons while I was having Cole. 
Luckily the hospital was only 4 minutes from our home making it easy for the 
Dylan to go back and forth. 

It was 6:30 pm before the hospital staff got around to hooking up the medication 
for the induction. Dylan and I were so elated to meet our newest Son in a matter 
of hours. The labor didn't last long. 9 hours later May 17th 2013 @ 3:11 am 
Cole Anthony was born 6 pounds 5 ounces 17 1/12 inches long. He let out the
 faintest of cry's while the nurse wiped him clean on my chest. He was perfect
 and looked just like his brothers. Dylan and I couldn't of been and more happier. 
We were blessed with this perfect little human 10 fingers & 10 toes. 

I stayed my 24 hours in the hospital and it was now May 18th a Saturday and I was ready 
to take Cole home.The other children were so excited for us to get home. Dylan had just came
 with the car seat and I was signing all my release paperwork. I had been cleared to go and so 
had Cole we had both received a clean bill of health or so we thought. 

The last protocol was for Cole's Pulse Ox to be monitored. We wanted it to be 94 or higher.
I thought nothing of this test and carried on with packing up. The nurse hooked up the 
monitor and stayed for awhile shaking her head. The monitor was showing a oxygen level of 84
 the nurse assured me that she must of been doing it wrong and brought in a new nurse with 
her and a new pulse ox machine. The test was redone but the same outcome 

a 84 was showing on the monitor. The nurses tested themselves and the monitor read 97 
obviously the monitor was working correctly. 

I asked what the next step was since they couldn't release him until the oxygen level 

ready 94 or higher. They advised they would wait an hour and retest and if it still wasn't
 showing a 94 or higher an Echo Cardiogram would be order. They left the room and called 
Cole's pediatrician. 

 All the sudden the nurse came back into the room and said Cole's doctor ordered the Echo and Cole was taken to the NICU to be given oxygen to boost his oxygen levels. I was confused and didn't know what was

going on. Dylan went with Cole while I waited for my final discharge instructions for myself. The nursed assured me everything would be okay and it was probably nothing. After everything was signed I went straight to the NICU. They had him hooked up giving him oxygen through his nose. The NICU doctor introduced himself and advised the Cardiologist would be there within 30 mins he was coming from Tacoma.

Dr Park the Cardiologist  arrived exactly within 30 mins and introduced himself to Dylan and I. He said this is just protocol and usually they find nothing and sometimes they do. The Echo would rule out a heart defect and he started to preform this on my 1 day old son. I was terrified but he advised he would only talk during the test if he found something wrong. The Dr was very quite for about 30 mins the NICU nurse had asked a question and he repeated "if i find something I will talk!!!" Within 5 minutes he was talking to the NICU doctor and the nurse. They were pointing to the screen and going over we could do this we could do that plans of attack to each other. The tears started pouring down my face I thought I was going to pass out.

Dr Park Closed his computer and turned to Dylan and I and said the words every parent fears. Cole has a heart defect and it called Total Anomalous Pulmonary Venous Return with an Atrial Septal Defect. 

How did the Doctors miss this when I was pregnant I went to so many appointments so many ultrasounds. I went to a Fetal Maternal Medicine Specialist who did my 12th and a 20 week anatomy scan. How the hell did they miss this, told me my baby was fine i'm furious..  

Nothing made sense and my whole world as I knew it stopped. My baby was sick and he will need open heart surgery to fix the heart defect or he will eventually die. How do you prepare yourself or family for this??? No question about it the 
surgery will have to be done.  He will need to gain more weight before the surgeons can do the surgery. I'm scared and lost wishing this was all a bad dream. In the next weeks to come I will know more and will have a date for the surgery. As for now Cole is home and I love on him daily and thank God everyday he wakes up and I see his precious face.  

You think you know but do you???

We never know in life how things will unfold. We try to visualize it but in the end its all up to God. You go about your daily life busy everyday work, sleep,eat ,clean, cook,  the days end and we do it all over again the next day. As days pass into weeks months years we think very little of the time past. You never really notice the bigger picture till you are forced to look more closely at life.

 I am starting this blog to share my Son's journey with CHD as it unfolds before mine and my families vary eyes. I will try and share as often as I can as the days turn into weeks and the weeks turn into months. 

 I live in Washington state. The pulse ox screening has been in effect for the last 6 month's in the hospital I had my baby in. I thank God everyday for everyone who fought hard to get this bill passed in my state. 

Everyone should be aware of CHD Congenital heart defects are responsible for more deaths in the first year of life than any other birth defects, the National Institutes of Health reports.