Surgery is set

chd-ribbon

Hi everyone, I wish I could be writing a happier post but now is not that time. My older daughter has Truncus Arteriosus (to learn more about her and her heart read this post).

Just to give a background, she was diagnosed when she was 7 days old and had her first open heart surgery at 11 days old, this surgery repaired her heart but it was not a permanent fix. The piece they placed in her heart does not grow with her body so naturally, this is what needs to be replaced. She has also had 2 heart Caths.

We usually see her cardiologist every 9 months or so to see how things are going, well we saw him in January and found out that it is time for her to have her replacement. So surgery is scheduled for the end of March, and along with the surgery, she will also have a cath.

Now I know nothing could ever prepare me for this, it’s just one of those things that you never want to happen. I have been in this position before, and with the experience, I know what to expect. I will tell you that no I am not ready for them to take her away from me, I am not ready for the update telling me she is cooled down and ready to go on bypass, I am not ready to hear that she is in fact on bypass. From this point forward I know that until I get the news that her body is warm and her heart is beating again, I will not be able to take a deep breath.

Then once the surgery is over, I have to prepare myself to see my daughter who loves horses and all animals, who is looking forward to her Make a Wish trip to Hawaii and
swimming with dolphins, lying in a hospital bed with a machine breathing for her. She is such an amazing girl and to see her so helpless…………words just can’t describe.

What is new this time is that I now have my younger daughter, during this time she cannot get attention from me, she will be away from her mother and best friend, yes I will have family around her to support her, but it can’t be me, and this kills me.

I know once this is over I will be dolphin-heartgrateful to be on the other side of surgery, to know that we are set for a few more years. We will no longer be at the edge of our seat at every cardiology appointment, that I can’t wait for. But as for everything else, it could never happen, and I would be happy…

So if you see me, and I don’t look okay, know that I am not. I am in fact teetering on the edge of a breakdown, I am using all my energy to keep it together. But also know there is nothing that can be done, this is life, this is my life, this is my daughters’ lives, and now this is my Fiance’s life. We will all get through it, and it will hurt like hell, but there will be a brighter side.

God Are You There?

Image It has been about 5 years since my world fell apart around me. Let me explain: When I was 18 years old I was “saved” before this I attended Catholic schools and knew about God but never experienced him. Soon after this I was engaged to my then boyfriend (and now husband) and was forced to leave my parents’ house because I left Catholicism and was going too baptized again through my new church. These days were the scariest and the most exciting days of my life.

Soon after my husband and I were married we began to attend church, first it was an Oneness Pentecostal we were only there a few months before we saw how wrong their doctrine was. After this church we stayed out for a while again life got good, we got pregnant and had a baby.However this baby was not healthy, my daughter was born full term and had a regular birth we named her Faith. After 2 days in the hospital we were both released, it wasn’t until she was 1 week old I began to notice something was wrong. One night she was on her changing table and I thought she was breathing fast. She had a doctor’s appointment the next day so I figured I would just bring it up then. Well the next day came and my father and I went to the pediatrician. When we arrived at his office they put us right in a room then the doctor came in. He checked her weight and was ready to send her on our way then I asked him how a newborn breathes. This question took him by surprise and he decided to check her heart beat, it was then my life changed. He heard a murmur and we were sent to a cardiologist. 3 hours later we left the cardiologist with a diagnose Truncus Arteriosus type 2, just 1 week before we had named her Faith.

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She had her repair when she was 11 days old and it was my faith that carried me through that time. I knew God was there and no matter what happened she would be fine, 7 days after her surgery she was still in heart block and we were facing another surgery to put a permanent pacer into her body, that night I hung my head over her crib and just prayed that God would let us skip this surgery that I could not bear to hand my child over again so soon. That night they scheduled her surgery for Monday; it was Saturday. The next morning we went to the hospital and immediately looked at her heart rate and to my amazement she was doing some beats on her own!! As the day went on her heart got stronger and by night they had canceled her surgery, and she was sent home 3 days later.

When Faith was 4 months old she had a Heart Cath done to help her heart function better, it was successful. It was right after this my husband and I stepped into church again, this time a regular Pentecostal. While there my husband was even studying to become a minister, it was while he was in these classes we realized just what Arminianism was, this was hard for us. We did not agree with the doctrine and did not think it lined up with the Bible, so we left. However we felt that church was still where we need to be so we went to the next extreme, Calvinism. Life in Calvinism was worse than life in Arminianism, still my husband was studying to become a minister and he was well on his way there. We accepted this theology with open arms until the day we started to think; I wondered does God really decide who goes to hell and who goes to heaven? And if so how do I know that I am safe or that my daughter is safe? What if we weren’t elected? These beliefs ripped my faith into shreds.

Today I am finally on the mend; I have not regularly been to a church since then and have no desire to. I know that I am a Christian but I do not know if my Christianity will be accepted among others. Today I stand knowing that I am loved by God and my family is loved by God (by the way my husband left wanting to be a minister behind and is now in business) Today I live my life and hope that God is there with me I do not feel him like I did in the beginning but I also know not to expect that. There still are those days that I do wonder; God are you there?