Warning!!! Most of my posts are just the day-to-day. This post is-well, pretty honest. I debated posting it on my public blog as it shows some pretty raw emotions!!!! And it's probably some long crazy ramblings of this heart mom. So if you don't like crazy, emotionial ramblings of a heart mom, well.......wait until the next post I do. It will probably be happier!!
Before Kate was born she was not prediagnosed with her heart condition. So when we had her it was like any other normal birth. I'm not saying I was totally oblivious to anything going wrong. I worked in an OB/GYN office for six years. I had seen things on occasion that broke my heart. So I have gone into my pregnancies knowing anything can happen at any time. I was even a bit worried about Kate's heart because of Preston's VSD. In the last few visits some things were even said by my midwife during the routine ultrasounds that did put up some red flags in my mind. But I just thought I was being paranoid as we had just taken Preston to Primary Children's a few weeks before Kate's birth to check on his heart. I even remember seeing a young dad checking his baby girl in for pre-ops for her open-heart surgery the next day. I struggled to keep tears back as I was about to have a girl of my own and could not imagine what this poor young couple was going through. You don't reeeallly think it will happen to you.
So really, nothing could ever prepare me when the pediatrician told me that Kate would have to be life flighted down to Primary Children's for some more testing on her heart. I honestly think the whole time they knew it was serious but down played it. They figured PCMC would have to lower the boom anyways.
When we arrived and were given the diagnosis, and I went into shock. And I remained that way for the entire two weeks she was there. It was literally an out-of-body experience. I had fallen off the planet and I was floating in outer space. I tried so hard to understand what was going on with Kate. But my newly-founded stupidity would not allow it. The poor NICU nurse who had to deal with me even wrote her diagnosis, surgeon's name, etc. on post-it notes to try and help me. I think all those post-its were floating around space with me as well.
But somehow I felt pretty pulled-together despite the situation (with LOTS of help from my mom, family, and friends). It must have been one of the Lord's tender mercies. I tried so hard to balance time with my boys and time in the hospital. I tried so hard to just understand her condition and be her advocate. I pumped so Kate could have the best and I wouldn't lose my breastmilk. I tried to prepare handing her over to the surgeons. I tried to accept the Lord's will, whatever it would be.
I was so excited (and scared!) to bring her home one week post-op. But during that time I also think I finally fell back to earth. Everything had finally hit me. I had just put my tiny newborn girl through a big surgery. But she survived! She didn't have any big problems in the PICU. She weaned off her oxygen well. I got her to nurse a few weeks later. That is a big deal!!! So I struggled, trying to figure out why I was so depressed.
One day someone brought over some hand-me-downs. Now, don't take this the wrong way as I appreciate not having to buy her clothes, but when I pulled out the 2 toddler clothes, that's when I lost it!!! Okay, not that I hadn't cried at all before, crying was an every day occurrence. But crying over 2 toddler clothes!?!?! What THE HECK was wrong with me??? I could not figure these weird emotions out. I was just so overwhelmed. Where will we be in two years??? Where will KATE be in two years?!?! I had been told so many scary things and so many Doctors say "We don't know" I could not fathom any kind of future!!!
Well, I quickly put the clothes in the back of the closet, secretly fearing that Kate might not even make it and I would have to face those clothes again. But then, as weeks went on, those clothes became a focal point for me. If I can just take it one day at a time for the next two years and sort my thoughts and emotions I figured after that time I could somehow move on.
Well here we are! Just recently I pulled the clothes out of the back. Two years later, now what??
I did not think the time would come so quickly. I had to laugh (and cry) as my understanding has changed so much.
I realize I will always worry about her. How can I not? Her condition is rare (PCMC had only seen a similar case once) and the path it takes is unpredictable. We will follow it for life. But my worry is different. It does help that she has done so well. If we face surgery again, I know I will again freak out. I will have to be blindsided again. But I am prepared (kind of). I will do anything for my kids.
I have actually felt gratitude for this experience. Obviously, I can't come out and say "Wow! I'm so glad Kate went through that!!!" But we all face our trials. And we definitely don't get to pick what they are. And people out there definitely have it worse than us. But without this, faith would just be a word I learned in church. Now I have walked in it. I have been forced to tear down a lot of walls. All the good things in life are just that much better. I've learned so many things about KC I didn't know before. I did not really know how strong he was. He literally carried me through this time.
I love my daughter who has taught me more in her two short years than all my previous 28.
And as far as her closet goes, well we just don't have the room to fit twenty plus years of outfits!!!!
Before Kate was born she was not prediagnosed with her heart condition. So when we had her it was like any other normal birth. I'm not saying I was totally oblivious to anything going wrong. I worked in an OB/GYN office for six years. I had seen things on occasion that broke my heart. So I have gone into my pregnancies knowing anything can happen at any time. I was even a bit worried about Kate's heart because of Preston's VSD. In the last few visits some things were even said by my midwife during the routine ultrasounds that did put up some red flags in my mind. But I just thought I was being paranoid as we had just taken Preston to Primary Children's a few weeks before Kate's birth to check on his heart. I even remember seeing a young dad checking his baby girl in for pre-ops for her open-heart surgery the next day. I struggled to keep tears back as I was about to have a girl of my own and could not imagine what this poor young couple was going through. You don't reeeallly think it will happen to you.
So really, nothing could ever prepare me when the pediatrician told me that Kate would have to be life flighted down to Primary Children's for some more testing on her heart. I honestly think the whole time they knew it was serious but down played it. They figured PCMC would have to lower the boom anyways.
When we arrived and were given the diagnosis, and I went into shock. And I remained that way for the entire two weeks she was there. It was literally an out-of-body experience. I had fallen off the planet and I was floating in outer space. I tried so hard to understand what was going on with Kate. But my newly-founded stupidity would not allow it. The poor NICU nurse who had to deal with me even wrote her diagnosis, surgeon's name, etc. on post-it notes to try and help me. I think all those post-its were floating around space with me as well.
But somehow I felt pretty pulled-together despite the situation (with LOTS of help from my mom, family, and friends). It must have been one of the Lord's tender mercies. I tried so hard to balance time with my boys and time in the hospital. I tried so hard to just understand her condition and be her advocate. I pumped so Kate could have the best and I wouldn't lose my breastmilk. I tried to prepare handing her over to the surgeons. I tried to accept the Lord's will, whatever it would be.
I was so excited (and scared!) to bring her home one week post-op. But during that time I also think I finally fell back to earth. Everything had finally hit me. I had just put my tiny newborn girl through a big surgery. But she survived! She didn't have any big problems in the PICU. She weaned off her oxygen well. I got her to nurse a few weeks later. That is a big deal!!! So I struggled, trying to figure out why I was so depressed.
One day someone brought over some hand-me-downs. Now, don't take this the wrong way as I appreciate not having to buy her clothes, but when I pulled out the 2 toddler clothes, that's when I lost it!!! Okay, not that I hadn't cried at all before, crying was an every day occurrence. But crying over 2 toddler clothes!?!?! What THE HECK was wrong with me??? I could not figure these weird emotions out. I was just so overwhelmed. Where will we be in two years??? Where will KATE be in two years?!?! I had been told so many scary things and so many Doctors say "We don't know" I could not fathom any kind of future!!!
Well, I quickly put the clothes in the back of the closet, secretly fearing that Kate might not even make it and I would have to face those clothes again. But then, as weeks went on, those clothes became a focal point for me. If I can just take it one day at a time for the next two years and sort my thoughts and emotions I figured after that time I could somehow move on.
Well here we are! Just recently I pulled the clothes out of the back. Two years later, now what??
I did not think the time would come so quickly. I had to laugh (and cry) as my understanding has changed so much.
I realize I will always worry about her. How can I not? Her condition is rare (PCMC had only seen a similar case once) and the path it takes is unpredictable. We will follow it for life. But my worry is different. It does help that she has done so well. If we face surgery again, I know I will again freak out. I will have to be blindsided again. But I am prepared (kind of). I will do anything for my kids.
I have actually felt gratitude for this experience. Obviously, I can't come out and say "Wow! I'm so glad Kate went through that!!!" But we all face our trials. And we definitely don't get to pick what they are. And people out there definitely have it worse than us. But without this, faith would just be a word I learned in church. Now I have walked in it. I have been forced to tear down a lot of walls. All the good things in life are just that much better. I've learned so many things about KC I didn't know before. I did not really know how strong he was. He literally carried me through this time.
I love my daughter who has taught me more in her two short years than all my previous 28.
And as far as her closet goes, well we just don't have the room to fit twenty plus years of outfits!!!!
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We love you and miss you!!
Hugs & Prayers,
Christina
Jacob's Momma