Tuesday, October 23, 2012

My Angel on Earth

Yesterday afternoon, I had a routine check-in with my obstetrician. It was my first visit to the office since the confirmation of Leila's diagnosis. The anxious feeling I got walking into the waiting room was overwhelming. All of the pregnant women around me, new babies cooing and crying, unaware office assistants asking me if this was my "post-partum appointment", assuming that I terminated my pregnancy after the diagnosis... it was like a trip into the twilight zone. I felt like a fish completely out of water, like I didn't belong there anymore.

My subsequent visits to that office will not be like those of a woman carrying a healthy baby. To me, it seems they will be more like counseling than medical appointments. We discussed timing my appointments around the slowest times of day so I wouldn't have to be surrounded by reminders that I'm not like the rest of the women in that waiting room. We discussed that there is no need for a glucose test, a strep test, or any of the like. We discussed delivery options, and how if I chose a vaginal delivery, they would not need to monitor Leila's heart in the process. I was prescribed more medications for anxiety, depression and sleeplessness, medications that would not be so easily handed out if I were carrying a healthy baby. My heart was crumbling, piece by piece, at each reminder that my pregnancy won't be treated like everyone else's. We listened to her heart beat. It was as strong as it ever has been.

Then came the conversation about organ donation. Since being informed of Leila's fate, I have thought a lot about this subject. I have researched and I have come across contradicting articles, some saying anencephalic babies are not suitable donors, and some saying there is hope. There are medical and legal issues that come into play, mostly concerning the definition of "brain dead" and whether anencephalic babies can ever be placed in that category. There are concerns of the properly functioning organs dying as the brain stem begins to cease. In most cases (and there have been few), anencephalic babies who are deemed worthy of donating are placed on life support in order to preserve those organs for the recipient. This would mean our time with her would be less than if we were to let her pass naturally, and this is only if she is born alive. There is still a great possibility of stillbirth. That was a tough bite to swallow. Potentially giving life to another child would mean me letting go of mine sooner, and even so, the chances of her being a suitable donor are slim. I pray that as I wait for my OB to discuss our situation with the Organ Transplant Team at OHSU, that I can find peace in either outcome, knowing Leila could save a life, and also that it just may not be an option. I will keep you all posted as more information comes my way.

As I left the office, rather than anxiety and sadness, I felt surprisingly calm. I realized that although I may not be the "normal" pregnant woman, anticipating her due date with a nursery full of stuffed animals and plush furniture, me and my baby are special. I have something no one else in that office has: I am carrying an angel, and one that could potentially give life after hers is over. To me, she is worth every emotion that I will feel over the next four months, and beyond, and I am thankful every day for the lessons she is teaching me. Lessons about compassion, about understanding, and of unconditional love.

I asked God for a flower,
He gave me a bouquet.
I asked God for a minute,
He gave me a day.
I asked God for true love,
He gave me that too.
I asked God for an angel,
and He gave me you.





18 comments:

  1. You are just the most amazing person I have ever known and I love you so much lady!!

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  2. brought me to tears Em! love you so much

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    1. Love you, and miss you! Thank you for reading <3

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  3. My first appointment after our diagnosis will be in two weeks and I feel the anxiety already starting to build, for all the reasons that you just mentioned. I'm so sorry that it started off feeling so stressful, but glad for you that you were able to find that sense of calm. What a beautiful feeling. :)

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    1. The emotional rollercoaster has become less bumpy, probably because I'm used to the extremes at this point. Things change from hour to hour, it seems. It's been an okay few days, and support from awesome and loving people definitely helps. <3

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  4. I am pregnant and due in February with a boy who has anencephaly. When I found out I wanted to donate his organs, since they are all completely healthy. I went to a specialist and he told me there isn't anyway because they cannot declare these babies brain dead. I so wish I could help someone else out. You sound so strong and brave about the situation, and if you do find out that you can donate organs I let me know. I wish that I could do something, so many babies out there could use the help. Good luck with everything.

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    1. Ashley, I'm so sorry to hear of your need to find this blog because of our shared tragedy. Please feel free to keep in touch, here and on facebook (you can find me under Emilee Granatowski). I will definitely let you know if I hear otherwise about donation. I'm keeping my hopes high and my expectations low, because I know it's a long shot. But like you said, so many babies need the help and I hope with the help of God and a miracle, we can do that for them.

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    2. Hi Ashley, I'm also pregnant with a baby who has anencephaly and will likely deliver in February. We would like to donate as well, but are waiting to talk with our OB who has contacted the state's transplant organization. Like Emilee, if you'd like to keep in touch you can find me on Facebook, probably easiest through Emilee's page since my name is pretty common.

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  5. My thoughts and prayers are with you and your beautiful family Emilee. You have always been so strong. You and Leila give myself and I am sure many others strength in knowing your story.You and Leila will see each other again in heaven, as she is truly an angel.

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    1. Thank you, Danielle, for all your love and support <3

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  6. My thoughts and prayers are with you. I am a mommy to an angel myself. My daughter was stillborn in April, 2004 at 24 weeks. I remember the feeling of desperation, and despair, and the thought of walking into the doctor's office where the news was given was unbearable. Our doctor was unfortunately like your doctor's office staff, he actually asked me how the baby was. We were devastated, 5 weeks prior he was the one that told me our baby was gone.

    The pain you are having to endure is unimaginable, and unthinkable, and you are a very strong mommy to carry that while you enjoy every bit of time you can with Leila. If I can offer any advice to you, spend every day cherishing any memory you can make. For me it was late night kicks, hiccups, ect. These memories will be what make you smile in the future.

    Your angel will always be with you, and I pray for you and the peace you need to walk this journey in the days to come. I'm so sorry that another mommy has to go through this terrible pain.

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    1. Dear Joni: Bless you and your sweet baby. It is a very difficult road to walk, that's for sure. But we do our best to see the positive, and have found a love for Leila we didn't know was possible. Thank you for reading and offering support <3

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  7. REST IN PEACE LeilasMama..

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  8. She is once again united with her daughter in heaven.. God Bless her son, that she has left behind..

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  9. Rest in peace LeilasMama,
    If anyone would like to Donate to her son there is a Paypal account set up for him. Copy and paste this link.

    https://www.paypal.com/cgi-bin/webscr?cmd=_donations&business=8324U7LCFWHQL&lc=US&item_name=Dallas%20Nisenfeld&currency_code=USD&bn=PP%2dDonationsBF%3abtn_donateCC_LG%2egif%3aNonHosted

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  10. Memorial link for leilasMama

    http://memorials.whypreplan.org/EmileeFNisenfeld?tid=508-c386a6b6&utm_source=Memorials_Site&utm_campaign=1-Ocober_Launch_25_2012&utm_medium=email&autoplay=1

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  11. I didn't know you, but I knew of you. I don't think we ever said anything directly to each other, but I do know you gave my husband tips on parenthood when he was in the dark with our daughter. I also know you were the first girl he ever loved, and that he cared deeply about you until the day you left. But the truth is your death has affected me more than it did him. As a mother, I couldn't picture leaving my child... but I also can't imagine losing one. Over the last few weeks, you've been on my mind a lot. I read a news article about a woman with a stillborn baby who made a facebook group to share in grief to help healing. I looked at the group and found so many people who'd lost children, and, of course, it made me think of you and your beautiful little girl. And I owe you a huge amount of gratitude because you've inspired me to finally choose a path in life-- dedicated to stopping infant and fetal death. I know it will never fully stop, but that doesn't mean I can't join the fight. I've never lost a child, and I don't want anyone else to suffer what's happened to you. So thank you, Emilee, for the kind heart you had and showing me my way. I really wish I could've met you.

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