Friday, May 21, 2010

It Wasn't Her Heart. Lighting Struck Twice?

My heart is so low. And dropped lower yesterday when we spoke to the cardiologist at UVA yesterday. This would have been the tiniest bit easier to swallow, the news of "what happened," if it had been her heart.

I know everyone keeps telling us it wasn't our fault. But now it looks like an infection. Again, we don't know. Won't know for some time...weeks maybe a month. We know her heart was working fine, the valves were intact. So the only thing left is infection.

They are still waiting for results of a "microscopic" analysis of the organs. But nothing pointed to an arrhythmia, nothing pointed to a heart attack. There could have been a clot, the doc. said, but she was just grasping at straws it sounded like. She seemed to be fully assured that the surgery, the fact that she had surgery and all else involved showed nothing wrong with the heart.

She did put out one possibility of some abnormality with her immune system that perhaps we didn't know about. For example, she had the problem at birth where her white blood cells were being attacked when they left the bone marrow. That was auto-immune and solved quickly with drugs. But, she proposed, what if they didn't work properly? It's far fetched because their wasn't anything "wrong" with the making of them in the bone marrow, her problem was auto-immune, so I think it is a stretch to add another new medical problem to her list. Faulty white cells and an auto-immune issue is far out there - but as you all know, stranger things have happened.

I asked the doctor could this have happened to any baby - had she not had the surgery and been just fine at birth that this still could have happened and the doctor said yes. So, basically we had a baby who over-came such hurdles and then we missed the signs she was sick, we took her out at least three times last week and exposed her to goodness knows what...I know God is in control but at the same time, it's impossible not to feel like I did something wrong because she was my baby. I miss her so much. All night long she is in my head. I know God will get us through, because we have to for Lillian. But it is hard and really painful and this news just twisted the knife. And it keeps twisting. Lighting struck my baby twice.

Two details I'm noticing. Lillian threw up on Saturday. She had swallowed some pool water and eaten pizza - and had to be stressed out under the circumstances she was trying to process. But then we learned two other people we had seen and been with last week were throwing up. The last few days her cousins have been throwing up - acting fine after, but throwing up just the same. So, is their a virus going around? Was Gwen the first to show symptoms?

Also, this...I gave her probiotics. Not regularly, not a lot at a time. But one day I recall giving her maybe three finger tips of powder. A small amount but more than usual because I had been so flakey about giving it to her. I thought it would help her tummy. I thought that it was as safe as sugar. I had never come across "side effects and risks" in my research and her pediatrician said it was okay to give it to her. But read here: http://www.medicinenet.com/probiotics/page4.htm - no one told us she had a weakened immune system...not exactly. We were told to keep her from sick people since heart babies were at huge risk for RSV. That if she were to get a cold she would end up in the hospital and needing oxygen to help her get over it. So, I knew to be careful about getting colds. We never had anyone sick at our house nor went anywhere where people were sick.

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Several months back I had never heard of viral encephalitis nor that a perfectly healthy person could be taken down hard and fast. My brother was the victim of this nightmare virus attack and we almost entered a harsh world of seeing a loved one live the rest of their life with no short term memory or worse. He surprised the doctors by coming out so fast and so well with no brain damage. He also didn't die. We praised God and held our loved ones closer. I was seven weeks pregnant at the time.

Fast forward to November 19th and we heard the words during our 20 week ultrasound "something wrong with the location and size of the heart and some of the arteries." I never knew this world of heart-defects existed - I just didn't know. Within a few months we learned how dire the diagnoses was; would our daughter be born? Beyond all the expectations of the doctors she arrived and underwent open-heart surgery and they solved her white blood cell issue. She was discharged after about three  weeks. She stunned the doctors with how well she was doing.

I have never known anyone who's baby died from an infection. I recall at doctor at RMH during a class for new parents before Lil was born urging new parents not to take their baby out into the world for a long time after they are born - I want to say he said like four months. Myers and I did know when she was first home we needed to protect her. But her doc. visits went so well, her heart was working so well she was nearing two months old (one month developmentally). We kept her home for the most part but did go out here and there. We had people over. I think we were way over-confident in her strength. My poor baby was so new and so much weaker, I now see, than we realized.

We didn't protect her. She got sick. And despite all she had been through this took her down hard and fast and she couldn't knock it. I feel like a criminal. I feel like I let everyone share in her story and so many followed and loved her with me. And then I didn't take the kind of care you'd expect, that everyone assumed I was, and I let her get sick. And she didn't make it.

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I still haven't posted the story of that day. I will someday. But we didn't rush her to the ER. We weren't in a panic. There were just a few things we were concerned about. She wasn't that bad - we didn't have a clue she was deathly ill - not a clue. It all happened after the pediatrician sent us to the hospital and we had been there for some time, that she started to take a turn for the worst and was obviously doing poorly. We still didn't know what path she was on - we left to pack for UVA and her heart stopped while we were at our house.


8 comments:

  1. Laura, I think the real problem here is how little ANYONE knows. No one knows what caused Gwen's heart defect in the first place. No one knows what other kinds of problems could accompany it. If she had had a Q22 deletion (did I get that right?), then they know that there are all these other things that go with it--seventy things, I think it was? Things that have nothing to do with the heart at all. Maybe whatever caused her heart problem caused lots of other little strange things. You told me that she had a genetic duplication and that doctors are just now finding out that people have those at all, and they don't know what the effect of them is. In particular, auto-immune disorders are weird sneaky things that the medical profession still hasn't figured out, at all. They often co-occur with other odd medical things, and no one knows exactly why. You followed your doctor's advice--you asked your pediatrician about the probiotics; you told everyone how serious it would be if she got a cold, so they took all necessary precautions. JC didn't come over with me to meet her that one day because he was on the tail end of a cold. He wouldn't have known that was an issue except that you were so careful to tell everybody.

    The fact is that there is so much that no one could have known--that her doctors, who went to years and years of medical school and had tons of experience, didn't even know. How could you be expected to catch up in a 4-month crash course?

    This is what I do know, though. I know that you did everything in your power to give her the very best chance possible. I know that you loved her with the depth of your being, and that she felt that. And I truly believe that no parents on earth could have done more for her than you and Myers did.

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  2. Laura,
    I'm fully in agreement with Alisha. And I'm praying for you sweet friend.

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  3. I'd like to second Alisha's comments as well. Laura, you and Myers are model parents, with tremendous dedication. It is an honor to know you and to stand beside you. Keep talking, keep working through this, and know that we are all here for you.

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  4. I have never met a more loving and more compassionate parents than you and Myers. There is nothing that you could have done differently. You can't take responsibility for this tradgedy. You are an amazing mother and you protected Gwen, but there are some things that are just out of our control. My daughter had seizures that started when she was 4 months old. We took her in for lots of painful tests and procedures to understand what was causing the seizures. The doctors never found a cause which was devasting. When she stopped breastfeeding at 10 months, the seizures stopped. After that, I found a ton of similar stories online - and the seizures may have been caused by tilt of her head while breastfeeding. I felt a ton of guilt for putting her through all of those painful tests. I wish that we were all given a play book at birth to help us through all of these tough times.

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  5. Amen to what all these other dear friends have said, Laura. This is not your fault! I know you need to know why this happened so that you can stop endlessly replaying the what ifs. Blaming yourself is a natural reaction: you feel like somehow as a parent, you should have been able to protect her. But this is truly NOT your fault.

    To think we can protect our children from everything dangerous and scary in the world is the greatest wish of every parent. But it is foolish. We are so very limited in what we can actually control in life. In this day of portable hand sanitizer, 100SPF sunscreen and vaccination, it is hard to come to grips with that reality. You are NOT a negligent parent!

    And finally, even if you did make a mistake, which I firmly disavow, God is still sufficient. He forgives you. Forgive yourself for your perceived shortcomings. He has forgiven you for what needs forgiving. He will continue to do so till the day you are with Gwen again.

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  6. Laura, we don't know each other, but I know Myers and his family from when we were children. I have been reading each of your postings since I learned of you beautiful baby Gwen before she was born. I want to thank you from the bottom of my heart for the beautiful openness of your heart.
    My uncle (my father's younger brother) died unexpectedly on Sunday of a heart attack he suffered on Friday while riding his bicycle to work. He was only 52. It seems so wrong, so unfair, for people to die too young and unexpectedly. There is no understanding. Thank you for being vulnerable enough to let us see and share in your struggles to make sense of this. I have struggled with a continuous sense of loss since leaving PNG and coming back here to the US. In some way your words help me understand a little more my own sense of loss and that none of us are alone. Thank you.

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  7. Oh Honey. How I ache for you. I know you miss Gwen dreadfully and that you want her back. Even as far as we have come with medicine, there are still few absolutes. As a Mom, you want to find where the problem is and to put the blame somewhere. Don't lay it on yourself. You are not omnipotent.
    (If you become so though, let me know though, because I have some questions I would desperately like to have answered.)
    Yes, you let everyone share in her story. And I, for one, am richer for it. I loved her without ever meeting her. I loved, and hoped, and dreamed for her. And I have been feeling guilty too. While she was in the hospital I thought of her frequently, and prayed for her to grow healthy and strong. After she came home, I grew complacent, and thought less and prayed less, because I thought she was doing well. would you condemn me for this?

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  8. Guilt can and will eat you alive, Laurie. *hugs* to you. Guilt is not God's tool. I believe that. But I can also relate to you - I still replay all the things about Madison and wonder what I did that led to her loss. I still replay all the things I did in regard to my son and wonder what I did that might have given him Tourette's and Asperger's. When I say these things out loud, others reassure me those are senseless worries, senseless guilt, and on some level I know it's true, but I also know the guilt is always there. So I can relate. But although I don't know you as well as many of the people posting on here, I know you enough to know you are a wonderful, concerned, loving parent, and you did the best you could and took excellent (and I do mean excellent) care of Gwen. You did. I hope sometime when you are home if you want to talk you will consider me, even though we are not as closely connected as some of the other wonderful friends I see here. I pray pray pray that you can let go of the guilt and remember the love - yours for Gwen, ours for Gwen, ours for you.

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