Sunday, August 31, 2008
I visited the Legacy pages, where parents share the story of their child. I cried over their stories of loss and heartache, hoping I wouldn't have to be one of them. When we found out Jenna was so sick with Trisomy 18, I decided no matter what decision we made, I was going to create her a legacy page so everyone I know could learn about her and donate funds to the foundation.
The Trisomy 18 Foundation provides support and information for parents who are facing a diagnosis, friends and family who loved ones facing a diagnosis and also for medical specialists working with Trisomy 18 families. It is also doing research to find a cure for the disease and prevention to keep it from happening to another family.
I waited until today to write out the whole story. It took me a while because I cried while I was writing some parts of it, reliving the moments when I was rocked to my core. The story isn't as beautifully written as I would like it to be, but I knew how emotional I would get if I immersed myself completely into the story.
I am not one to ask for donations, but this foundation is wonderful. They have helped me so much and helped others going through this, too. If you can make a donation in Jenna's name, I would appreciate it. If you can't, it's not a big deal, but I would love to have you sign the guestbook there. Either way, please leave me a comment here to let me know you visited. I am including the link to her legacy page.
After my granny died, I heard her voice, which she hadn't been able to use for nearly two years due to Parkinson's Disease. This terrible, progressive illness robbed her of her ability to speak, and we all missed being able to hear her talk and laugh, because she had a great sense of humor. Being able to hear her voice again made me feel close to her. I don't know if it was really her or if it was my mind wrapping itself around the grief I was feeling and letting me hear her voice to comfort me, but either way, it helped.
Now that I've lost Jenna, I've wondered if I would find a way to feel close to her like I did with my granny. I might sound crazy, but I think she's finding ways to let me know she's all right and thinking about me.
My first sign was a few days after I came home from the hospital. I opened up my gmail account and went to empty the spam. I scrolled down through it like I normally do, just scanning to make sure nothing was there that I needed to keep. My mouth dropped open when I saw one of the e-mails was from someone named Jenna, and the subject line read "Thinking of You." I opened it, and it was spam for a greeting card line. Almost every day since then, I've received the same spam, and it even came to my yahoo account once or twice.
Even though I know logically it is a coincidence, I feel like she's letting me know she's watching over all of us and thinking of me. Maybe it's her way of telling me not to feel so bad, we will see each other again.
The day of Jenna's memorial service, we had one of the pastors read a story about a dragonfly. Someone posted it on the support board I've been going to, and I fell in love with the story. After the service was over, we went out to the cemetary to visit my granny's grave, and we saw two dragonflies, flying through the air, flitting around each other as though they were playing. I'd like to believe it was my granny and Jenna, letting us know they were with us.
Yesterday, I was cleaning house and walked past the picture my sister-in-law drew for us. The sun hit it just right and on my leg was a rainbow. The sun moved behind the clouds and out again, making the rainbow dance. I smiled, knowing it was my baby girl.
I might sound crazy, but I think Jenna is letting me feel her presence. I really hope it continues.
Thursday, August 28, 2008
I also received a phone call from the president of our local Baptist Association. He does all the publicity for the organization, and a few days before Jenna died, he sent me a press release about a program they had in the area. He started the conversation by telling me that he was sorry to hear that I had a stillborn baby. He went on to tell me that he was fussing at me in his mind because he hadn't seen it in the paper, and then he opened last Wednesday's edition to find Jenna's obit in there. He said, "I thought Tamara had so much more to worry about than our little announcement. I felt so bad, and I wanted you to know I've been thinking about you."
He is the sweetest man. Two years ago, when my granny first got sick, the pastor at her church wouldn't visit. We aren't sure why, but he would even go so far as to charge the church extra for a sick visit. Granny needed to talk to someone, because at that time, we thought she might be depressed because she had lost her sister. He said that if we couldn't get her pastor to come and visit, he would. When I was talking to him today, I told him that I wasn't sure if it had ran or not, and he said it was ok. I do feel bad if it didn't get in there, but most things from work from the last two months are mostly a blur.
Then, I got another call from a lady I did an interview with a week before Jenna died. I know it never ran because I never had a chance to do it. She asked me how I was doing, and I gave my standard "I'm all right."
She then said, "Betty told me you had a situation. I suppose it will take you a while to get over."
WTF? I mean really? I wanted to say, "I didn't have a situation. I had a baby, a baby girl to be exact and her name was Jenna. She was very sick with Trisomy 18, and she died. She wasn't a situation, she was my baby girl and I loved her."
A sitaution is being overdrawn at the bank or having a car wreck or getting a speeding ticket. Losing your baby girl to a terrible, fatal illness is not a situation; it's a tragedy. As a woman who has had children, she should be able to realize calling it a situation are not the right words to say.
I wish I could have corrected her, but I so stunned at that point I couldn't do it. She needs to be educated on how to talk to people who are going through (in her words) a situation.
I apologized for the story not getting in, and she said it was fine because she had a follow-up to it. She brought it up there today to me. Luckily, I was out to lunch when she came or I would have had to see her, and I might have said the wrong thing toher, as it has bugged me most of the day. She didn't even say she was sorry. Now, I'm thinking of not doing her measly little human interest, which really wouldn't appeal to too many as it is.
The moral of this story is to learn from my examples -- sympathy cards with a nice handwritten message are wonderful; telephone calls where they acknowledge what happened and offer sympathy are extraordinary but calls that only refer to this as my situation without going into detail are a load of crap and are completely insensitive.
Please, if anyone who hasn't lost a baby is reading these tips please learn from my examples. As a kind of aside, please don't tell anyone who has lost a baby to Trisomy 18 that it was for the best for them to die. We know that logically, but most of us wished we could have had a lot more time with them.
But, last night, as I looked into those big blue eyes of his and held him on my lap, I began to think about all the things he will experience that Jenna will never have the chance to do. Oh, I've thought about all the big things, graduations, weddings, children, and that hurts. But it also hurts to think of all the the little moments we will miss out on.
My arms will never hold her again, and I will miss that feeling of her in my arms, falling asleep as I gently rock her and sing lullabies, all the while looking into her eyes as they get lower and heavier with sleep. Jenna and I will never get to have those middle of the night bonding sessions, where it seems only the two of us are awake, her warm body pressed against mine. Jenna won't ever be able to learn to bounce on my lap, as my nephew Miller loves to do.
No crawling, no running, no first birthdays, not even a chance to pick out a backpack for the first day of preschool -- Jenna will get none of that. All she ever knew was me and my voice and my body, and how I long for her to have had so much more than that.
She and Tessa will never get to have all the fun sisters have. She won't be the bridemaids in Tessa's wedding and vice versa. She won't be there to hold Tessa's hand when Brian and I are gone.
And, I'm mad that she won't get to experience all of life. I'm sad that all she got to know was my womb. Even if she had lived, the Trisomy 18 would have kept her from living a full life, but I might have been able to show her more love than what she was able to get while she was here. When we weren't able to say goodbye early, I was secretly hoping for a few minutes with her. I didn't want her to suffer, but I wanted her to hear that I loved her. I think every baby should have that chance.
Wednesday, August 27, 2008
While sharing this journey has been very hard, I feel like no one talks about infant loss or babies being stillborn. When you lose a child at birth or a few months before, you join a secret society no one wants to be in. However, you are stuck there, and the only ones who want to talk about are the ones who have actually been through it. Other people just tell you not to withdraw from life or that you can always have another baby or it was meant to be. The people who are in the secret society know exactly what to say.
I want this whole secret society to end. People need to know their words can cause pain. They need to know what they should and shouldn't say. I don't really think they mean to be insensitive, but most are. I want people to be willing to hear about my Jenna, to know she lived and moved and was loved. Why should people look at my funny when I start to talk about her? She was my daughter, and I loved her.
My other reason for doing this is that I don't want anyone who is going through this to feel alone, especially those mothers and fathers whose child has been diagnosed with Trisomy 18. When I first got the diagnosis, I felt like I was the only one around. I had never met anyone who had a T18 baby. I wanted to find others who had been through what I had. I'm actually hoping to connect with people who have had Trisomy 18 babies through my blog. I would love to hear comments from you.
So, I'm going to be sharing my deepest darkest pain and most of my thoughts. I might even share details most people would not want to hear. However, I think those details and my pain and thoughts will help someone else, so I'm willing to forgo my privacy to do so. I don't want all of this grief to be in vain.
Tuesday, August 26, 2008
Tessa is out of school for the next week for the National Tennessee Walking Horse Celebration. It's held here every year, and the school system has always closed for it. She has gotten used to me being home and didn't want to go to the babysitter. She dawdled around so much that it was almost 9 a.m., when we left.
I took her to my aunt's house (she babysits for us), and when she asked me if I was ready to go back, I just started crying. I couldn't help it. One of the parents who dropped their little girl off gave me a hug, and my aunt hugged me, too. She told me I was strong and would get through it. How come I don't feel so strong when everyone is telling me I am?
I cried all the way to work and wanted to cry as I was walking in. I don't know if it was because today was two weeks since Jenna was born or if its because I was still pregnant the last time I was at work. I knew Jenna's diagnosis at the time, but while she still alive and moving around inside me, I kept a little bit of hope that we would have a miracle, that maybe, just maybe the amnio was wrong. Also, every morning Jenna was most active, while I was turning on the computer and getting ready for the day. Mostly, it was because of the Sun-Drop. I didn't even get one this morning; it would have just been too much.
My friend who works in advertising cut out Jenna's obit and put it on purple paper and laminated it. I teared up about that. I did really well, too, even so far as typing birth announcements. Those are going to hurt for a while, I think.
On the way home, I heard the Michael Buble song "Home." For some reason, it makes me cry and think about Jenna. Maybe it's because I want to go home, back to our home before we found out our child had Trisomy 18, when we were excited about the pregnant and looking forward to bringing another child home. I wish I still had those feelings.
Monday, August 25, 2008
I had lost almost 20 pounds since my first appointment in May. I know it's because I haven't been able to eat as much as I used to. I get hungry but fill up about halfway through. I hope to keep it up because I want to lose even more weight.
My uterus is back to its regular size. I talked to her about my problems sleeping, and she gave me a prescription for Ambien. I'm not supposed to take it every night, but I really need it. It takes me forever to get to sleep and then I wake up several times during the night. I hope the Ambien helps.
We also talked about trying again. She wants us to wait two to three months before we try to give me a chance to heal, both emotionally and physically. We are supposed to use birth control until then. I had to giggle a little when Brian and I were in Wal-Mart this afternoon trying to decide on a type of birth control. We both hate condoms, and I can't take the pill because it makes me gain weight. That won't work while I'm trying to lose. The thing is, being intimate is really the last thing on my mind right now. I hope as I go farther through my guilt, it will come back.
Anyway, we have decided not to try for the next two months and try to prevent it. The third month, we will try on our own. If/when that doesn't work, we will try Clomid. I hope it works quickly. I'm scared we won't be able to get pregnant again. She also said I would be considered high risk, and we would have special testing in the first trimester to see if there is a problem. It is called the PPAP test and the Nuchal fold test. If there seemed to be a problem with that, we would do a CVS, which would let us know without a doubt if there is a problem. I just hope nothing goes wrong when it happens.
Because my editor called today asking me to come in this week, I'm going to work two days this week and go back full-time the next. I'm not really sure I'm ready, but I'm going to give it a try.
Sunday, August 24, 2008
By the time we got to the church, the weather had cleared a little. It wasn't pouring down rain anymore, just sprinkling a little. My mom had taken the flowers to the church earlier for us, and I was surprised when we got there to see quite a few people already there. Someone had put our flowers on the table already, along with angels and other memorial items. I was surprised to see them there because I hadn't really expected anyone to bring anything. We also had the balloons we were going to release beside the altar table.
My sister-in-law, Melissa, caused everyone to cry when she came in. She's an artist, and a few weeks ago, she asked if I had any pictures of Granny's hands. I did, because I had taken some of her and Tessa's hands when Tessa was just a baby. She had drawn an angel baby with a hand reaching down. The hand was supposed to be Granny's. Melissa captured her hands exactly. I miss them so much and now I have a reminder of both her and my baby. I don't know how I can ever repay her or even thank her for it. It means the world to me and is now on one of our end tables in the living room. I had been holding it together pretty well until then. I just broke down, sobbing.
My cousin, Leah, who has a child with Down's Syndrome and lost her last baby, a boy, to a genetic disorder, brought me a huge flower arrangement with artificial flowers and an angel and baby figurine. She said when she lost her baby boy having something that wouldn't die really meant a lot to her, and she made it for me herself. It's beautiful, too, and I also have put in on one of the end tables.
We had two pastors conducting our service. Jack, the one who married us, also gave us a present. It is a card with Jenna's death date (the day we found out) with a bible verse and a picture of a baby at the bottom. He framed it for us, too. We have it up on the wall. I can't hang Jenna's picture, but at least I have that now.
Chris, the current pastor who also helped with the service, did a wonderful job singing "I'll See You in the Rapture" and "Amazing Grace." Even though I'm not religious, I love both of those songs, maybe because they remind me of my childhood and my granny. He also read a story I found about a dragonfly. It basically says what I think happens when we die, going to a beautiful place where we have wonderful new bodies and can soar like a dragonfly. It doesn't make any mention of Heaven at all. It could be taken as a Christian metaphor, but it also can stand for anyone who believes life goes on after death.
At the end of the service, Jack said he couldn't end without talking about my granny. Everyone loved her, not just us. She was an amazing woman, and he mentioned her strength rubbing off on us. I truly believe the strength and stubborness I inherited from her are going to get me through this. If she can survive all the hardships she had to endure over the course of her life, including losing two babies and carrying one of them for two months knowing it had died, I can get through this, mainly because of the love she gave me. He also said she was taking every opportunity to hold and rock Jenna in Heaven.
After the service, we all gathered outside to release the balloons. My uncle cut them apart because they had all gotten tangled. Everyone grabbed some (my aunt brought even more than the ones we had purchased) and started to let them go. We all watched as they went higher and higher. Everyone was surprised at how long we were able to see them. I think it was Jenna telling us she might be far away from us, but we will always have her in our hearts.
I wanted to include photos of the picture Melissa drew and also of the flowers Brian picked out for her. They were beautiful.
Saturday, August 23, 2008
I do have some memories of Jenna, although most are just pregnancy memories. The week after I got my first positive on the pregnancy test, I took one every day, just to see those two lines. I was amazed because we had gotten pregnant so quickly this time around. We didn't waste time with Jenna trying on our own. We went straight to Clomid, and it only took two cycles. I was just so surprised and couldn't believe we were pregnant.
When I calculated my due date, I found out I was due on Christmas Day. I was so happy to be due in December. My granny's death last year in December ruined that month for me. I thought having a baby that month would take away the sadness a little bit and cause it to be filled with joy. Look at how wrong I was. Now, I have a double reason to be sad in December.
I didn't really get to feel Jenna move too much. She was so small, and I had so little amniotic fluid that it affected her movements. But, I could count on her moving two times a day. One was early in the morning. My doctor said I could have one caffeinated drink a day. I always had a Sun-Drop in the morning at work. As I turned on my computer at my desk, she would give a little kick. The more I drank, the harder the kicks would get. The other time was at night after Tessa went to sleep. I was usually on the computer, and she would kick and roll around. I loved those times, and I miss it now.
Every time we went to the doctor, except for once, Jenna's heartbeat was extremely strong. She took after all the women in the family and was just as stubborn as she could be. Considering how little brain matter she had, it's a wonder how long she lasted. It was because of that stubborn streak she inherited.
After she was born, I was able to see her. Most babies with Trisomy 18 have clenched fists, but Jenna's weren't. She had long fingers for a baby so small, but they were all there. Her feet were tiny and one was clubbed, but she still had all 10 toes. She had Tessa's nose, too. I think she would have looked a lot like her.
I know it isn't too much, but these are my memories of my baby girl, Jenna.
Friday, August 22, 2008
We are having Jenna's memorial service on Sunday. (I originally said Monday and realize I made a mistake. Sorry about that.) The pastor (Chris) of the church that I grew up in is going to sing a song along with his wife and also recite a poem I found on the Internet. The pastor (Jack) who married Brian and I is going to conduct the service.
I think a lot of him because even though he was no longer the pastor at the church where I grew up, he continued to visit my granny after she became ill. The pastor who was at the church during the time of her illness came to visit her one time during her long illness. After Chris became pastor, he visited Granny several times, but even then, Jack continued to visit and officiated at her funeral. He is just a nice man, so I'm glad he's able to do it, even if I'm not the most religious person around.
The son and daughter-in-law of Brian's parents best friends own a flower shop nearby. Brian went on Monday and put in an order for a huge table arrangement. It cost a lot of money, but we both said we won't be able to do much for her, so we want to be able to do this. We are also getting 10 pink and white balloons from her. That is enough for my parents, my siblings, their children, and Brian, Tessa and I. We are going to release them outside after the service is over so they can float up to Jenna.
I ordered cards from Office Max that have her name and birthday on it, along with her obituary and a quote that says "Imagine a love so strong that saying hello and goodbye in the same day is worth all the pain." On the back of the card will be a poem about angels who stay for a short time.
We have an altar table at the front of the church. We are going to put the flower arrangement, Jenna's urn and two angel figurines on it. The first angel figurine came from the hospital, and the second came from Brian's parents friends. I love those two. They are so sweet, much nicer than Brian's parents, who I'm having a lot of trouble forgiving for not coming to the memorial service. I realize they have to travel to get it here, but it's only a four hour trip. They're retired and take longer trips to go and see Brian's dad's family once a year in Michigan.
I'm also thinking of downloading a couple of songs from ITunes to play while everyone is coming in. I love "Tears in Heaven" by Eric Clapton and Kenny Chesney's "Who You'd Be Today." I also thought about Garth Brooks' "The Dance." I love that song anyway, always have. The line, "I could have missed the pain, but I'd've had to miss -- the dance," always gets to me. The pain of losing Jenna is bad, but I loved her. I don't think I would want to miss that at all.
Thursday, August 21, 2008
We want another baby, not to replace Jenna. She can't be replaced. She was our baby, and nothing will change that. We just want Tessa to have a sibling here on Earth. Besides, Brian is going to be 39 at the end of this year, and he wanted to be finished having children by the time he is 40.
I hope it's not an insult to Jenna's memory that we aren't waiting any longer than three months. But, by having her and losing her, I realized how much I really did want another baby.
I have made a decision though. I'm going to use the next three months to get in better shape. I would like to lose about 30 pounds between now and then. If it takes awhile for us to get pregnant again, I'll continue to lose weight. I'm going to go back to my water aerobics class and use the exercise equipment at the Rec Center.
I know I didn't do anything to cause Jenna to have Trisomy 18. It was simply a bad egg or a bad sperm. If it was the egg, it was created when I was created, so of course, I couldn't have had anything to do with it. But, at times when I'm feeling really down, I feel guilty and wonder if being overweight could have caused it.
Tuesday, August 19, 2008
No one knows what they will do in this situation until they have to go through it. I always said I would terminate a pregnancy if we were given a diagnosis that was incompatible with life. I was firm in that stance, too. I said I wouldn't terminate if it was just Down's Syndrome or spina bifida, but I now know those can be incompatible with life. However, when I first heard that Jenna was sick with Trisomy 18, all kinds of thoughts ran through my mind.
My first was that I couldn't terminate even though Brian and I had decided that we would if she had Trisomy 18. She was my baby. I was here to give her life, not take it away. It was funny that I felt that way because I had always been pro-choice. Not necessarily pro-abortion, I just believed abortion was a decision a woman has to make on her own with her doctor, not something to be decided by politicians. But, even though I always felt that way, I didn't think I could do it at first. Jenna was very much wanted, so how could I do away with a baby I had tried so long to have?
I then thought of the problems she would have if she survived birth. Babies with Trisomy 18 have problems with their heart, kidneys, brain and other major organs. She would be severely mentally handicapped. Most likely, she would suffer.
I was her mother. I loved her. One of greatest jobs as a mother is to keep our children safe, healthy and free of pain. By continuing the pregnancy and taking the chance of her being born alive, I risked filling her life with pain and suffering. I will say it again. I was her mother. I loved her, and I couldn't do that to her.
I think even those who are pro-life would have to take those things into consideration. I don't think they would automatically know they wouldn't terminate, or at least, I would hope they would think about their child suffering before making that decision.
So, as anyone who reads this knows, I didn't get to terminate. I carried Jenna until her heart gave out, and she just couldn't try anymore. In some ways, I'm glad I wasn't able to end the pregnancy because I didn't have to make the choice of ending her life. But, on the other hand, I had to see her birth defects, which only proved to me she would have suffered terribly during delivery if she had been alive. Also, because of those defects, the birthing process was very unkind to her body, leading to deformities no mother should ever have to see.
So, when you hear of a family who has gotten a fatal diagnosis for their unborn child, please don't say you know what you would do. Until you walk a little while in their shoes, you can't know.
She is telling everyone that Trisomy 18 is a deadly form of Down's Syndrome. No, it's not. Not many people around here have heard of Trisomy 18, so I feel like she's spreading misinformation.
Trisomy 18 is where a baby has three sets of chromosome 18. Down Syndrome is actually Trisomy 21, where the baby has three sets of chromosome 21. Down's is compatible with life, while Trisomy 18 is not. They are related as they are both trisomies, but saying Trisomy 18 is a deadly form of Down's is like saying pancreatic cancer is a deadly form of skin cancer. Just like Down's and Trisomy 18 are both trisomies, pancreatic cancer and skin cancer are both cancers, but they are completely different.
I wish I had a way of educating people about Trisomy 18. A Web site does exist to support those who are going through this. It's www.trisomy18support.org. They allow parents to do legacy pages for their children, and I'm going to create Jenna a page there. I'm going to post about it on all my boards, so maybe people will know.
Monday, August 18, 2008
I'm having a hard time finding the good in this. I know it's best that Jenna passed away without going to term. From the birth defects that were present at birth, I know she would have suffered terribly if she had be delivered while alive. But, I don't know why she even had to have Trisomy 18. I know how Trisomy 18 occurs. Either the egg or the sperm had an extra set of chromosome 18. But, I don't know why it had to happen to us.
I don't want to lose the optimistic person I've always been, but this has me scared. I'm afraid we won't be able to get pregnant again when we do try because I have PCOS. I'm scared that if we do get pregnant again, that baby will have problems. I'm afraid I'm always going to be sad. But, most of all, I'm afraid I'm never going to be the same again.
So, I'm going to try to look for the good in this. Right now, it's hard, but I'm going to try. For one thing, it has brought Brian and I closer together. It has taught us what is important and what is not. We haven't been fighting over the small things lately at all.
As I mentioned early, Jenna didn't suffer. I am so thankful for that. All she ever knew was the warmth and love my body had for her. I did love her, and I am thankful for the time I had with her because she taught me I could love another child just as much as I do Tessa.
I also found friends on the Internet through all of this. When I posted my story on various boards, people came out of the woodwork to share their story of loss with me. I so appreciate their support. I also found out how supportive my family really is. They love me and were as sad as I was to lose Jenna.
Of course, I would gladly have given up all of those things (except for Jenna not suffering) if it could mean she wouldn't have Trisomy 18.
Sunday, August 17, 2008
Yet, she can miss the memorial service for her granddaughter? I don't get it. She should be here for it, even if my father-in-law doesn't want to come. She did say that Brian needed to take some extra time off from work so I can relax and get better, which I appreciate, but I just feel like they don't even care that their granddaughter is dead.
I guess I should expect it. They've always treated Brian different from their oldest son. Their favoritism is so obvious. I know if this had been his brother's child, they would be there no matter what.
I'm hurt for myself and Tessa and Jenna's memory, but my heart is breaking for Brian. These are his parents, and they don't even want to be here for him for what will be one of the hardest events of his life. It's like they don't even care what he's going through. He's hurting, too. I don't think I've ever seen him cry as much as he has the past few weeks.
I don't know how I'm going to get through this anger. Brian is acting like its no big to him, but I know it is. I just wish his parents could be as supportive as mine.
I wrote it myself, so I hope it's ok. I tried not to put too much personal information in it, just the facts. Here it is:
Belinc, Jenna Grace was stillborn Aug. 12 at Middle Tennessee Medical Center in Murfreesboro. She was the daughter of Brian and Tamara Belinc of the Flat Creek Community. She is survived by one sister, Tessa Kate Belinc; grandparents Bobby and Patricia Blackwell of Shelbyville and Martin and Joann Belinc of Pope, Miss; uncle and aunt Tyler and Melissa Green of Shelbyville; uncle, Marty Belinc of Sarah, Miss.; and aunt Erin Blackwell of Shelbyville. She was preceded in death by her great-grandmother, Alethea Green of Shelbyville, and her grandfather, Thomas H. Martin of Lynchburg. Feldhous Memorial Chapel was in charge of cremation. A memorial service will be held Aug. 24 at 3 p.m., at Smith Chapel Methodist Church with Jack Carney officiating.
I know my grandfather, who really hasn't had much to do with me my whole life, reads our paper, so he will see this. I wonder if it will bring him to contact me.
Saturday, August 16, 2008
What do I tell them? I feel like saying I had a miscarriage is just wrong. It wasn't a miscarriage. Jenna was very sick, and she died. I delivered a baby, albeit a very small one. I'm in no way implying that an early miscarriage is not painful, because I know it has to be, but it's not what I had. I had to go through labor and delivery, have an epidural and actually deliver a baby.
I think saying she was stillborn is closer to the truth, but even that is not exactly right, either. I guess I've always considered a baby stillborn when it is full-term. I was only 20 weeks and five days when Jenna died. I think saying she was stillborn isn't really fair to those women whose babies really were stillborn.
I've thought about saying she was born prematurely and was just too early, but again, that isn't really accurate either. She died before she was born, so I had to be induced. I didn't just go into labor spontaneously.
I guess I could just tell people she was very sick and died, and I had to be induced. The problem with that is right now I'm just not able to go into detail about it without crying. I wanted something quick and easy to tell people to help keep my emotions in check, but that may not be possible.
The other thing I've been wondering is what to tell people when they ask me how many children I have. It will come up sometime. Do I say one and leave it at that? Do I say two, but one died before she was born? I guess there is no one right answer for any of these questions; the right answer is the one that is right for you.
I dread it so much. Almost all of the people on my beat knew I was pregnant. I was so happy to be expecting, and with me being Lifestyles Editor for the past seven years, many of the people on my beat have become friends, so of course, I told them. I am so afraid of going back and having them ask me how I'm doing or how the baby is doing or how much longer I have.
Because I have been at the newspaper for almost nine years now, most of the people I work with aren't just co-workers but friends, too. I know they mean well and their sympathy is real, but they also have no idea what I'm going through. None of them have lost children.
For the people who don't know me very well, it will be fake sympathy. I know many of them will be thinking they are glad it isn't them. I'd rather have no sympathy at all than that fake sympathy I know will be coming.
Besides any time anyone asks me how I'm doing, I know I'm going to tear up. Just about anything makes me cry right now. Birth announcements are going to be the worse, especially when I get one from a woman who isn't married and has six other kids, all with different last names. I shouldn't be judgmental of those women, but this is bringing out that bad side of me. Why do they get to have all of those children and mine had to be sick and died?
Maybe the next week will help me, but I don't think it's enough time. I may ask my doctor for another week when I go for my follow-up appointment Monday. She'll probably give it to me. Even that extra week won't really be enough, but I guess it will have to do.
Friday, August 15, 2008
I told him that I wanted to get an urn, and he took me back to another room where he had a selection. He told me I could get a large one or a smaller one. I chose the smaller one. I just didn't think it would be right to use one of those big ones for such an itty bitty baby. The urn is black with gold etching. It is so pretty and dainty.
I thought I would be able to either spread the ashes over my granny's grave or bury them at her feet. I just can't do that. I don't think I want to be apart from her right now. Maybe in the future, I will change my mind, but for now, I want her in the house with me.
I'm going to buy a shelf to hang on the wall. Her urn will go on this shelf, along with a photograph of the level 2 ultrasound I had when we first suspected the Trisomy 18. It is such a pretty shot of her profile. I'm going to have her name and birthdate engraved on the frame. The other thing to go on the shelf is a Build a Bear Workshop teddy bear. I'm going to pick out one just for her and a matching one for Tessa. Jenna's will go on the shelf along with the other things. That may sound silly, but it is what I want to do.
I am also going to make a scrapbook with her. It will include the rest of the ultrasound pictures, cards I received from friends and family members and all the items from the hospital. My sister-in-law has agreed to help me.
I don't know if these things will make me feel better, but I think it will help me in the grieving process. I just want to do these things for her because I won't have an opportunity to do much.
We picked out a really cute outfit for her to wear to school today and bought new shoes to match. Her backpack was Littlest Pet Shop and was almost bigger than she is. Here are a few pictures of her first day, including one of her barely awake. I just love the way she poses.
Thursday, August 14, 2008
When we got home tonight, there was a message on the machine from the funeral home that is handling Jenna's cremation. They are actually doing it for free, which I think is wonderful. When my aunt called them to check with them about it, they said the family is going through enough without having to worry about paying for that. We are going to buy the urn from them.
The terrible thing is we might not be able to get any cremains back. When an adult is cremated, it is the long bones in the leg which create the ashes. Jenna's bones hadn't hardened yet because that doesn't happen until a child is much older. I just hope we are able to get something.
We haven't completely decided what we want to do with the cremains yet. My two choices right now are to spread her ashes over my granny's grave or to bury the container they come in at the foot of her grave. We are going to get a stone with her name and angel date on it to put at the foot of Granny's grave.
Tonight, Tessa and I were talking about Jenna. I let her see the pictures, and she wanted to know why Jenna was so red. I explained that it was because she was not really ready to be born, and babies are red like that until it is time for them to come. She said she wished Jenna hadn't died. She asked if she could get a small teddy bear for her. I tried to explain that we couldn't really get her anything now, and she asked if we could put it on her grave. I told her I thought that would be a good idea. I might even have a teddy bear engraved on her stone.
I'm trying to decide what to do for her memorial. I don't want anything over the top, but I do want to remember her.
Wednesday, August 13, 2008
Even after she was diagnosed with Trisomy 18, I wasn't hurting like this. Maybe it was because I was able to pretend it wasn't real, because she was still with me. But to be honest, as long as she was inside of me and moving around, I still had hope that maybe, just maybe the amniocentesis was wrong, and she didn't have it.
Now, the hope is gone. She's gone. And, I'm not sure how to get past this. I know I have to because I have a wonderful husband and a beautiful older daughter. But, I was supposed to have a beautiful younger daughter, and she's not here.
I'm keeping a quote from Pooh's Grand Adventure in my mind: You're braver than you believe, stronger than you seem and smarter than you think.
The reason I'm keeping it in my mind is for two reasons. When my granny was in the hospital and dying, T and I were laying in the bed watching the Pooh movie. I was almost asleep and thinking about how would I make it without my granny. That quote popped up. It was almost like she was telling me that. In fact, I know she was.
Then, last week, my friend Kara from a Web site I visit, sent me a card. It had this quote on it. It gave me strength to read it.
So, now I know people think that about me, so I'm going to start thinking it about myself. With the help of my family and the strength I do have, I will get through this. But, I never knew how hard it would be.
I wasn't sure if I wanted to look at the pictures and neither was "B," but I decided I wanted to see them this morning after we got home. Some of them are blurry, so I'm glad my aunt and cousin took some more. I really want a shot of her hands and feet.
We went over to my aunt's for a little while this afternoon to pick up "T," and I showed her the items the hospital gave us. She wanted to see the pictures. My aunt said, "Bless her heart. She tried to hold on, but just couldn't." I think so, too.
"B" decided to look at the pictures, too. I was so happy he did. He said it gave him closure, and the pictures weren't as bad as he expected.
My sister-in-law said she will help me make a scrapbook for Jenna. I want to do that before we have the memorial service.
Tuesday, August 12, 2008
Tonight, I have a new angel watching over me. Jenna Grace, my second daughter, was born today, Aug. 12, 2008, at 11:50 a.m. She weighed 4.4 ounces and was 6 inches long.
I found out that she had passed yesterday when I went in for an ultrasound to see exactly what birth defects she would have. The ultrasound tech was so nice. As she ran the wand over my belly, I knew something was wrong because Jenna wasn't moving. The tech finally looked at me and said, "Sweetie, I can't find a heartbeat."
"B" hadn't been able to go with me because he had to take "T" for her kindergarten physical. Luckily, I had asked my aunt Peggy to go with me, so I wasn't alone. We had a crying spell in the room, especially when we started talking about my granny.
I talked to the maternal fetal medical specialist, who explained what would happen. He called Dr. McGowen's office so I could go and see her. On a side note, I had been wondering why Dr. Speer hadn't called me at all. The ultrasound tech informed us that he had moved back to Pittsburgh. It makes me feel better to know that.
I went down to Dr. McGowen's office, and she said I should come back to the hospital that night around 8 p.m., so I could spend a little time with my family before I left. She also explained the procedure to me.
I went home and spent a little time with "T." I love that little girl so much, and she gave me all the hugs I needed. She would have been a great big sister to Jenna. She decided she wanted to spend the night with my aunt Joyce Ann instead of my parents, so we took her over there. Peggy and Ashley agreed to keep Rosie, so we took her to my mom's who took her over there. Then, we were off to the hospital.
When we arrived, our nurse took us back to a room at the end of labor and delivery. We were far away from the other moms who had just given birth, and I didn't have to hear them crying. Our night nurse was Dawn, and she was wonderful. If we needed to talk, she stayed in the room with us and talked as long as we needed to. She got my IV started and then inserted the cytotec, which are little pills inserted into the cervix. That hurt really bad. I wasn't expecting it to hurt that bad, and I know Dawn felt really bad about hurting me.
The pills would be inserted every six hours. Dr. McGowen had ordered an Ambian for me so I would be able to sleep. She also said I could have as much pain medicine as I wanted. After the Ambien I was out, until a few hours later. I started cramping pretty bad, so Dawn gave me some Dilaudid in my IV. That really helped. Around 5 a.m., I got my epidural.
At 7 a.m., our day nurse came on. Her name was Marta, and she was wonderful, too. A little while later, I felt something trickle out, and she checked me. My water had broken. She said it shouldn't take much longer because after the water breaks, things speed up.
My mom got here at 8:30, and DH left because "T's" social security card is missing. She needs one for school, and only he or I could do it. We needed it by tomorrow, so I didn't mind him going. In a way, I was glad he was going, not because I didn't want or need him here, but because I knew how hard of a time he was having with all of it. He also didn't want to see Jenna, and I knew if he was here, he might feel pressured to do it.
At 10 a.m., Marta came in to insert more cytotec and checked my temperature. It was 100.5. She said she would check it a little later, and if it had gone up, she would give me some Tylenol. About an hour to an hour and a half later, I felt some pressure, but I also felt like my temp was going up. Iasked my mom to come and feel of me, and she also thought my temp was going up.I called Marta to come in. She took my temp, and it had gone up to 101.3. She gave me my Tylenol, and then she checked me.
Jenna was coming out feet first and was about to be delivered. She called Dr. Moore (Dr. McGowen had two days off, but she did call to check on me today which I thought was sweet). Jenna Grace was soon delivered. I told Marta that I didn't want to see her until they cleaned her up and wrapped her in a blanket. I was scared about seeing her at all, but I knew I needed to do it.
The placenta didn't deliver right away, so Dr. Moore said to give it a little time. They brought Jenna Grace in to see me. She was dressed in the tiniest little pink dress and hat, made especially for early babies by a group of women who had lost their own babies. She had Tessa's nose. In fact, had she lived, I think she would have looked a lot like Tessa. Her hands weren't clenched like most Trisomy 18 babies, but one foot was clubbed. She also did have a large cystic hygroma on the back of her head and neck. Her skin was very red, but she just liked a tiny baby.
I'm doing Ok today. It will probably hit me harder in the days to come, but right now, I'm just happy she's at peace and will not suffer.
Sunday, August 10, 2008
After I was finished ordering them, I decided to do a search for books about Trisomy 18. Most of them were medical or pregnancy books. Only one was a personal account of having a baby with Trisomy 18. I'm not really wanting to read one right now, but I know in the future, I will.
Maybe I should write my own personal account of it and share Jenna's life with everyone. I don't know that I would be able to write it now. Everything is just to fresh, but this blog is an account of it. I'm also thinking of journaling. With those two things, if I want to, I may be able to recount everything that happened during the pregnancy.
A book and also a Web site for those who wish they could have terminated but couldn't or didn't might be Jenna's legacy.
Thursday, August 7, 2008
All of them are built around a Christian belief system. All of the stories on those sites center around a strong faith in God, which I don't have. I do believe in a higher power, but it is not really the God of Christianity. Things that have happened over the past few months (especially this situation with Jenna) have reinforced my need to move away from the faith of my childhood.
Most of the people in these stories say the reason they didn't terminate is because they believe God should decide when to end a life, that God gives life and God takes it away. I may alienate some people with this, but I don't really believe that.
I want to find a site for people who decided not to terminate because they wanted to give their child a chance or who didn't terminate because they didn't have that option, like what we are going through. I can't join those other boards, because I just don't believe the way those other people do.
I talked with my therapist today, and she said I ought to start one of my own. She said I can't be the only woman out there who is going through this. I feel very alone right now, because most women in this situation who want to terminate are able to.
I'm trying to find something good in all of this. Not a reason, because I don't believe everything happens for a reason, but I want something good to happen because of Jenna's life, no matter how short it is. Maybe I can start a site for women who are like me and need support, but who aren't Christians or who don't have a strong faith. Maybe that will be the good in all of this.
Wednesday, August 6, 2008
I don't know how long Jenna will be with us. People have told us we are meant to learn from this experience. I am going to keep my eyes open to find out what I can learn from this. At the moment, all I can see ahead is pain.
This is not the choice we would have made if things had been different. My mom says its a sign that we weren't able to do it, that there is a reason we are now having to try to carry to term. I'm not sure I even believe that everything happens for a reason anymore. Maybe it will come to me over time.
One thing I have learned from all of this is that Jenna is a stubborn little girl, like all the women in my family. Only once when we've gone in has her heartrate not sounded strong. Dr. McGowen also heard her moving around, although I'm not really able to feel it so much anymore.
In some ways, I'm very at peace with this decision, much more so than I was a few days ago. But, in other ways, I am scared to death of what this is going to mean for our family.
I feel like I should be able to say something so poetic and moving, because I'm a writer. It just isn't coming to me at the moment.
She returned my call yesterday. She was on the defensive as soon as I picked up the phone. She tried to blame the weight mistake on me. I quickly told her that I knew how much I weighed and reminded her that the staff also had my medical records in front of them.
I also told her that we were led to believe we would not be seated with the other women who were doing this electively. She couldn't give me an answer to that. I went on to tell her that her clinic made a bad situation even worse.
She said, "I've been in abortion medicine for 25 years, and this decision is hard on anyone who makes it."
I said, "This was a very much wanted baby, a baby that we tried for for a long time. I just hope that the next couple who comes to your clinic in this situation is treated with more respect than we were."
She didn't have a response to that either. My doctor called my specialist, who also called down there to complain. They will no longer be sending patients to that clinic, because I am not the first one to complain about them. I think they've had three complaints this year.
Monday, August 4, 2008
I can pretend for a while that everything is all right, but I have this nagging feeling at the back of my mind at all times. I know I have to keep it together for "T," but it's getting harder and harder every day, especially with all that is happening.
I'm having trouble eating. When I do eat, my stomach is constantly upset. Sometimes, I overeat. I'm worried right now that I'm developing an ulcer. Tonight, my stomach is killing me.
I also can't sleep at night, but that's all I want to do during the day. At night, I just sit up on the Internet or watch television or read if I can. It's midnight, and I'm still not in bed.
It's easy to project a strong front to the world, but that is not what I'm feeling. I've always been good at covering up when bad things are happening. But, when I'm alone, the stress is killing me. I don't know how I'm going to get through the next few months.
I couldn't sleep at all though worrying about the next day. "B" didn't sleep well either. I think we dozed off about 3 a.m., and we had to get up by 7. We made it to the office by 9 a.m., our appointment time. My doctor told me that it was not an abortion clinic, although they did do that, too. She said we would be separated from the people who were doing this for other reasons. We go in, and there are a few women in there already, and I go to the window, expecting to be taken to a separate area. She just made me sign in, took mine and "B's" ID and gave me a clipboard with a huge pile of papers and told me to fill them out.
While I'm filling out this paperwork, more women are coming in. Some of them are laughing and joking, and you can just tell they are so happy to be getting this over with. "B" keeps leaning over to me and saying, "This is an abortion clinic. It's not supposed to be," or "What is going on? Why did Dr. McGowen send us here?" I'm actually getting pretty frustrated, and then, they call us back. I'm figuring they'll separate us then, but I was wrong again. Instead the lady grills me about how much I weigh. I tell her, and I said, "I told y'all this twice yesterday over the phone."
I also saw that she had my records from my doctor's office in front of her, which they had when I called the day before. They sent me back out to the waiting room, even though they knew we were a special case.
So, we wait and wait, and finally, a nurse calls out my name. Again, I'm thinking we are about to be separated from the huge crowd gathering in the waiting room, but she tells me "B" can't come with me. She weighed me and I had lost 12 pounds since my last doctor's appointment. I guess the stress had gotten to me. Anyway, she sends me out into the waiting room.
An hour later, when the waiting room is filled to standing room only, the door opens and another lady calls out my name. Wishful thinking again, that we'll be separated, but again, she won't let "B" come back. She takes me into a room with an ultrasound machine and tells me to get up on the table. She says she's going to do an ultrasound to date the pregnancy. I get up on the table, and I say, "We're here because there is a problem with the pregnancy, not because we want to be," and she says, "I know, I saw your chart." I start to cry. She pats me on the leg and tells me they have made a huge mistake.
Because of my weight and height, I have to be a two day procedure, which they only do on Thursday and Fridays. She said we'll have to come back. I told her that we had driven hundreds of miles, "B" had taken a day off from work, etc., etc., etc. She says it doesn't matter, that they have to follow the rules because of my health. I'm so frustrated at this point that I don't know what to say. She says she's going to do the ultrasound anyway and won't charge us anything. She is going to do it just to date the pregnancy. She asks if "B" would want to see the baby, and I said yes.
So, she goes and gets him, and we explain the situation to him. He's furious. He was already upset because he knew I was upset about sitting in that waiting room with all those women, but this just made it worse. The ultrasound tech says she is really sorry, that the director has explicit instructions on what to do when someone is in our situation, and that wasn't followed.
Then, she does the ultrasound. The baby is measuring two weeks behind. She also has more fluid on her brain (lots of swelling, she said), and she said it looks like some of her brain is missing. My fluid is still extremely low, and I had a braxton hicks contraction while she was doing the ultrasound.
When she tells me all of this, I just start crying again, and so does "B". It was like adding insult to injury. So, then we meet with the counselor who tries to get us to reschedule. "B" and I just look at each other and say we'll do it later. And, we leave. By the time we got out of the office, it was too late to check out of our hotel, so we had to stay another night.
I don't know what to do now. My doctor sent a note to work saying I would be out for two weeks, and my editor, bless her heart, told our human resource lady and publisher that I had lost the baby, so they wouldn't have to know about it. I can not go back to that place in Atlanta. I refuse. I figure if they messed up that bad on just that I can't trust them to do the actual procedure, but I just don't know if I can carry to term, emotionally. So, I have no idea what I will actually tell them when I go back to work.
I did some research today, and there is no clinic in the state of Tennessee that will help us. The state law here says that all second trimester abortions have to be done in a hospital. I contacted a doctor in Knoxville who assisted with helping another lady end her pregnancy early, but they have changed procedures there since she had her procedure. Now, it is handled on a case by case basis. Each case goes before a committee, who makes the decision. I talked to the genetic counselor at that office today, and she said she doubted they would allow it since I didn't start out as a patient of this doctor. She is going to talk to him and get back to me.
Traveling to Atlanta again to go to a different clinic might be our only option if we decide we are going to go through ending it early. The only problem is "B" probably can't take any more time off from work. I'll have to have it done this week, and "T" starts kindergarten Friday. I would have to miss the first day of school for her, and I don't want to do that.
I know many will say just don't have it done, but I am going crazy now. I haven't felt her move since Saturday. Dr. McGowen said that it might be hard to feel her move because of the low amniotic fluid, so I can't be sure if she's even still alive. I'm going tomorrow to listen for the heartbeat. I keep thinking and wondering if she's suffering. What if I don't end the pregnancy and carry her to term and she does survive? How is that fair to her? How is it fair to put her through that suffering? I just don't know what to do.