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Thursday, July 29, 2010

Jenna's story

I have a lot of new readers on my blog who might know that we lost Jenna to Trisomy 18, but who maybe don't know the whole story. That's one of the reasons I'm telling it. Another reason is that Jenna's two year "angelversary" is coming up, and I want as many people to remember that day as possible. The third reason is because of a new blog,, which features the stories of women who have lost babies, and I plan to submit my story to them.

Jenna's Story

This story is a long one, so please bear with me. I was so excited in the spring of 2008 to find out we were expecting again. My oldest daughter was almost five years old, and I was ready for another baby. My daughter was over the moon about being a big sister. My family had also experienced the loss of my grandmother just four months earlier. She was the backbone of our family, and we were devastated. We were all ready for something happy to happen, and my pregnancy and the new baby were going to be just that.

The pregnancy progressed very normally. I wasn't sick like I had been with my older daughter, just extremely tired. I was so glad to get out of the first trimester, and my 16 week appointment was scheduled for the Monday after Fourth of July. The cookout at my aunt's house that weekend is one of the last times I was truly happy without any bittersweet feelings popping through.

At my appointment that Monday, my doctor asked if I wanted to have the AFP done. This tests for Trisomy 18, Down Syndrome and Spina Bifida. I took the test because I liked to be prepared. If I was going to have a baby with Down Syndrome or Spina Bifida, I wanted to be prepared for the birth. I didn't allow myself to think about the possibility of Trisomy 18. A diagnosis like that just didn't happen to us.

Two days later, my doctor called me herself to give the results of the AFP test. I had a one in 10 chance of having a baby with Trisomy 18. She reassured me that this test had a lot of false positives, and this did not mean our baby had it. It just measured the risk factors, but even so, she wanted me to go for a level 2 ultrasound with a maternal fetal medical specialist and had already called them. I had an appointment for the next day.

My husband took the day off to go with me. At this point, I was nervous but not scared to death yet. The night before, I researched the AFP and the rate of false positives. Besides, the odds were in my favor. I had a 90 percent chance of having a healthy baby. I wasn't going to be that one. My fears came on stronger the next day after the ultrasound.

Jenna was measuring behind, and she was curled up in a ball for most of the ultrasound. The ultrasound tech and the MFM thought they saw a cystic hygroma (a fluid-filled pocket on the back of the neck) and a clubbed foot, but he couldn't be sure. He recommended an amniocentesis. He explained the baby could have Trisomy 18 or even one of the other chromosomal disorders. We opted to have it done, but because my amniotic sac hadn't yet fused to the uterine wall, I had to wait a week.

Even though I hoped for the best, deep down, I knew she had it. I knew I wasn't going to be able to bring her home. I spent the next week doing my research, reading about women who had been given a diagnosis of Trisomy 18. Some carried to term, while others "said goodbye early," which is what the Trisomy 18 Foundation calls ending a pregnancy due to the disorder. My husband and I discussed our options and went for the amnio.

We decided we would say goodbye early if our baby had a disorder deemed incompatible with life. If she had Down Syndrome, Turner Syndrome or any of the other non-fatal chromosomal disorders, we would carry to term. Even though I am not religious, I prayed for a non-fatal diagnosis. I wanted her so bad. I wanted my older daughter to be a big sister. I wanted another baby. I had always wanted a houseful.

My FISH results were due on Wednesday. I was at work (at the time I was the Lifestyles Editor at a newspaper), and I carried my cell phone in with me during an interview. I told them I was waiting on my amnio results, and the lady made a joke about me being excited to find out the sex. I didn't tell her any different (later, she sent me a sympathy card, reminding me of that day). Just an hour later, while I was still at work, the call came. The FISH results showed she was a girl who had full Trisomy 18. This meant all of her chromosomes were affected.

My doctor wanted me to wait to make any decisions until the final results came in. I told her we would probably be terminating the pregnancy. She said she knew we wouldn't be able to do it at her hospital because it's Catholic-affiliated, but we should be able to do it in Nashville. I left work soon after, sobbing all the way home. I just remember saying over and over again, "She was so wanted. I wanted her so much." I was devastated. I didn't eat, and I couldn't sleep.

I had to tell my five year old, Tessa, that her baby sister, the one she wanted so much, was very, very sick and wasn't going to live. We decided that night we needed to give her a name. I suggested Mary Grace, but Tessa didn't like it. We made the decision to let Tessa choose the name since that was going to be her only connection with her sister. She chose Jenna Grace.

The full results came back in the next week, and we met with my doctor. She wonderful and was apologetic, explaining that because of the political atmosphere and the state laws in Tennessee, none of the hospitals in the area would end the pregnancy for us. I wanted to say goodbye through a labor and delivery procedure, so I could have pictures of Jenna and hold her, trying to make memories that would have to last a lifetime. Instead, she said we would have to travel to a clinic in Atlanta, four hours away, to have it done. I wouldn't be able to see her, hold her, have pictures made or get her remains back in order to have her cremated.

Brian and I discussed it. Even though I really wanted all of those things, I also wanted to do everything in my power to keep her out of pain. That was my job as a mother, to keep her from hurting. If I was selfish in wanting those things and carrying her to term, I couldn't guarantee that she would never suffer. We decided to go to Atlanta.

When I made the appointment, I was asked a ton of questions, one of those specifically being my weight. I told them twice. I also informed them this was a case of much wanted baby who had a chromosomal abnormality. I had to have my doctor's office fax my files to them, which also included my weight. We left on Friday to go to Atlanta. I felt like we were sneaking away to do something wrong, something illegal. I didn't tell many people what we were doing because I knew I would face judgment when that was the last thing I needed.

I know some people would say I was doing this out of selfish reasons, that I surely just didn't want a special needs baby. That is so far from the truth. First and foremost, I didn't want Jenna to suffer. Most doctors won't do any kind of medical treatment on babies with Trisomy 18. Parents who make the decision to terminate a pregnancy are doing so out of love, making one of the most selfless decisions a parent can make. I wanted her here with me more than anything, but my love for her allowed me to over ride that in order to do what I thought was the right thing.

The clinic we were going to had a separate plan for women who were terminating due to medical reasons. I was supposed to be separated from the women who were ending their pregnancies due to "social reasons." That didn't happen. I was called back to verify my weight, which I told them again. I thought we would be separated and taken to a special waiting room, but we weren't. The waiting room continued to fill up with women, some of them laughing and giggling and talking about getting it over with. There they were, happy to be ending a pregnancy when I just wanted a baby who would live. I wanted to shout to them and tell them I would take their babies, but I didn't. I just buried my head in my Harry Potter book, which is kind of like comfort reading for me.

I was called back again to be weighed. I had lost 12 pounds in less than a week. I thought then we would be separated from the rest of the women, but again, I was wrong. Brian was starting to get mad, wondering what was going on, when I was called back a third time, this time by the ultrasound technician. She explained to me that they had made a mistake in regards to my weight and how I was treated. I didn't qualify for a one day procedure like I was told over the telephone. I would have to do a two day procedure, and they couldn't do it that day. I would have to come back if we wanted to end the pregnancy.

She decided to do an ultrasound to date the pregnancy and asked if Brian would want to come back. He was furious when we explained the situation to him. She did the ultrasound, which showed Jenna's growth was even farther behind. She had very little fluid, which indicated her kidneys weren't working, and the tech said she had very little brain matter. Brian and I just sobbed on the table.

After meeting with the counselor, we left. We knew we wouldn't and couldn't go back there. After a lot of soul searching, we made the decision to carry Jenna as long as she lived. It wasn't the choice I wanted, and I still don't feel as though it was the right one for me but I had no choice, really. No one in Tennessee was willing to help me.

The next few weeks were agonizing for me. Because her fluid was so low, I had trouble feeling her move. I often wonder if that would be the day she died and if I would walk around with a dead baby inside of me. I often felt like I was losing my mind. Two weeks after our trip to Atlanta, my aunt and I went to our specialists office to do an ultrasound to see what birth defects we would be dealing with exactly. Brian couldn't go with me because he had to take Tessa for her kindergarten check up. The tech was chatty, and she knew our situation. She told me up front that because of what we had gone through, she would tell me exactly what she was seeing on the screen and then let the doctor elaborate. She ran the wand over my belly and said, "Oh sweetie, there's no heartbeat."

I cried a little, but over the last month, I had done more than my share of crying. At that point, I felt kind of cried out. I didn't know I had a lot more tears to come. I met with my doctor who told me to come back later that night to be induced. I had to tell Tessa her sister was dead, which is one of the hardest things I've ever had to do. We went back in that night and had wonderful nurses who attended to us. The next morning, I knew Brian wouldn't be able to handle seeing Jenna, and because of everything we had been through the last month, there were kindergarten things for Tessa that we hadn't gotten done. I sent him to do it and had my mom come to the hospital.

Jenna Grace was born at 11:50 a.m., Aug. 12, 2008. She weighed 4.4 ounces and was 6 inches long, much smaller than what she should have been for her gestational age, which is common for babies with Trisomy 18. She did have a cystic hygroma and a clubbed foot. Also, her brain and skull never developed, and this caused her skull to collapse during the birth process. Luckily, the nurses covered most of it up with a little hat, but I still saw more than a mother ever should have. We had her cremated, and her urn, along with her pictures, sit in a small curio cabinet on my wall.

I have learned a lot since that day. I vowed to make a difference for Jenna. I first wanted to change the laws here in Tennessee so that hospitals would have to perform abortions in the case of health of the mother, poor prenatal diagnosis and rape and incest. I wrote a ton of letters, and I even gave a speech in front of some of our state representatives about it. That is one of my proudest moments. I have often heard, I won't do prenatal testing. It doesn't matter what it shows; I'll love my baby no matter what. I loved my baby. Women who terminate due to poor prenatal diagnosis aren't doing so because they don't love their babies and don't want them. They do. They just don't want them to suffer. One of the things I have learned is that no matter what, the decisions a parent with a baby with Trisomy 18 make always come from love.

Because of Jenna, I am back in school. I am going to be a grief counselor and help women who have gone through similar losses.

Tuesday, July 20, 2010

Winner of the Brandy's Bald Baby Bands

The winner of the Brandy's Bald Baby Bands give-away is Breaking Hearts, Kaycee. She has been notified and will recieve her product soon. Check back because I'm going to be giving away a beautiful piece of jewelry next.

Thursday, July 15, 2010

Poor Tessa

We went back to the doctor today about her medicine and her incontinence issues. Her test results for her bloodwork, urinalysis and x-rays to check for constipation all came back normal. They are working on getting her an appointment with a urologist at Vanderbilt Children's Hospital, which is wonderful for me. It's the best hospital in the area.

We switched her medicine to Focaline. One of the reasons we went to this one is because it can be opened and sprinkled on applesauce, making it easier to take. Tessa has had trouble swallowing them. I hope it will help her without making her flat or weepy.

Tessa has had a cough for almost two weeks now. Last week at the doctor, he listened to her lungs and said it wasn't bad and to just give her Robitussin. I did that, but it has gotten worse every day. He was going to give her an antibiotic and then he heard her cough. He listened to her lungs and said she had a touch of bronchitis, and it is causing her to have asthma symptoms.

She is on an inhaler now and has to use it three times a day. I hadn't noticed her wheezing, and she hadn't really mentioned it either. I paid closer attention tonight, and it was bad after she coughed or if she ran. I feel so bad that I didn't notice it sooner. He said the asthma will go away once the bronchitis clears up.

She had a bad coughing fit tonight, and we did the inhaler. She stopped after doing that, but as she was trying to go to sleep, one nostril stopped up and the other started running. I felt so bad for her. I hope she doesn't start running a fever and get really sick. She has had too much going on lately, poor thing.

Wednesday, July 14, 2010

Second grade, here she comes

Tessa's principal finally called me yesterday and apologized profusely for not getting back to me sooner, saying he had taken two weeks off. I totally understand that, and I don't fault him for it at all. I just wanted to talk to him sooner because I am impatient.

I explained to him what the test results showed and also what the psychologist and the pediatrician said. I told him I wanted her to go to the second grade, but to be placed in the resource reading group. I also said I wanted her teacher to give her a bit of extra time with the work she has to do and offer additional instructions if needed. He agreed.

When I get the reports from the psychologist, I am supposed to call him so we can set up a meeting with her second grade teacher and the resource teacher. We will write up a plan of action, although we have decided not to do a formal IEP at this point.

If I see that our plan isn't being followed, I will insist on getting one then. Last year, the school had a tutoring program in the afternoons, and if they receive the funding for it again, Tessa will do that, too. Her psychologist did warn about doing too much school, so he recommended we only do tutoring once a week.

I feel comfortable with the decision to let her go on to second grade, a lot more comfortable than I did with the idea of holding her back. She is going to need help. I know that, but I know for the sake of her self esteem she needs to go on with her classmates. The principal said he thinks the medicine will help with some of her problems, and I think they will, too.

Speaking of meds, we go back to the doctor tomorrow, and I am going to ask him to lower her dose. Some days, she is really good, basically herself but calm, but it's the other days that bother me. On those, she is either flat with no emotion whatsoever, or she is prone to burst into tears with no apparent reason. I don't want that for her.

Her pediatrician told me last week we could lower the dose if I wanted, but I wanted to try it for two weeks. Now, I wish I had done it. If lowering the dose doesn't work, I am going to ask to try another drug.

Monday, July 12, 2010

Ready for fall

I am so ready for fall. It's always been my favorite time of the year. I have said it before, but I always associate fall with new beginnings, mainly because of school starting back. And, this fall, I will be starting my senior semester of college. That means, I'll be graduating next May, baby. Yippee.

I can't tell you how excited I am about this and how proud I am of myself. I am planning to go back and get my masters degree, but I want to work a while first. I am looking into working for social services or a local counseling center. Social services pays more, but I'll get better experience with the counseling center.

I am so proud of myself, especially considering what I went through the last two semesters. I was pregnant during the fall semester and in October went on bed rest. Luckily, I was going online, and I was proud to bring home three As and a C. The C was in Astronomy. During the spring semester, I was adjusting to life with a newborn and a six-year-old, along with taking the hardest class of my life, statistics. I managed to make two As and two Bs.

This fall, I am taking 16 hours. My classes are Behavioral Modification, Foundations of Mental Health Counseling, Learning Theories, Research Methods and its lab, and Sociology of Families. Two of my classes are on campus, and the rest are online. I hope I don't kill myself.

I finished my financial aid stuff last night, and it said that I am eligible for a grant. It doesn't mean I will get one, but if I do, that will be great. It will mean less to pay back in loans.

Saturday, July 10, 2010

Brandy's Bald Baby Bands Review and Give-A-Way

***If you are viewing this at, please visit my blog at to enter the contest.

After two little boys, Brandy Peck was super excited when she found out she was having a girl. People asked her if Rylee was a girl or a boy, even if she was rocking all pink and earrings. "I decided if she was wearing a huge flower on her head on her head, then no one would ask me anymore," she said, "and it actually worked. Finally everyone was telling me how cute my little girl was."

Brandy's Bald Baby Bands were born. The idea for the name came because Rylee is still pretty much bald. Brandy loves making the items, and she has branched out from just flower headbands to butterfly and bow headbands, flower barrettes and adorable tutus.

Brandy sent me a brown headband with a pink flower to review. I loved the stretchy material of the headband. Tessa put it on, and it stretched to fit her seven-year-old noggin. It looked pretty cute on her, too. The flower is securely attached to the headband.

Ella did not find it to be annoying at all. She left it on for quite a while and wore it out to eat with the family. We got tons of compliments on her newest accessory. It went adorably with her pink and brown outfit. Isn't pink and brown the most awesome color combination for baby girls? The headband is a dark brown with the flower graduating from light pink to dark pink.

One lucky reader is going to win a headband. Even if you have a little boy, these would make a great gift for someone with a little girl.

To win, you must first do the mandatory entry. Go to and then leave a comment here about what product you would want and in what color combination.

Extra entries (leave a separate comment for each one):

1. Become a follower of mine on here (if you are already a follower, just tell me) 2 entries

2. Vote for me on Top Mommy Blogs 2 entries

3. Like Brandy's Bald Baby Bands on Facebook 2 entries

A winner will be chosen July 17 by Thanks so much, and thanks to Brandy for providing the headband for the give-a-way.

Friday, July 9, 2010

Two years ago today

When I think back to the last day I was truly happy without a tinge of sadness or without a bittersweet feeling, my mind drifts to Fourth of July weekend 2008. We went to my aunt's house for a cookout. We shot fireworks. I was looking forward to my doctor's appointment on the following Monday because I knew we would set up my big ultrasound to find out what I was carrying. I was 16 weeks.

Dr. McGowen asked me at that appointment if we wanted to do the AFP test. I wanted to do it, mainly thinking of Down Syndrome and Spina Bifida. I did it because I wanted to be prepared if I was going to have a baby with one of those disorders. I didn't even really think about Trisomy 18. I wasn't going to have a baby with a fatal disorder. That kind of thing hadn't happened in my family in years. Our babies had almost always been healthy.

Two days later, July 9, I received a call at work about my AFP results. A one in 10 chance of Trisomy 18, she said, and started to reassure me about false positives. I just remember saying, "That's the one that's incompatible with life, right?"

Everyone tried to reassure me about the odds. A 90 percent chance she didn't have it, they said, but I knew deep down she did, especially after we went to the level ultrasound the next day.

Today starts a bad time of the year for me. Last year, I went into a funk that started July 9 and lasted about two months. I don't want that to happen again this year. I read on another deadbabymomma's (our name for ourselves for my blogger friends who don't know) blog about not just grieving their deaths but also celebrating their lives. I really want to do that with Jenna.

She lived, even if it was for just a short period of time. She changed my life. She changed my focus and made me see what life is really about. Her life pushed me to change mine. I am back in school, pursuing an old goal because she existed. I don't avoid people who have experienced a loss of a child, even though I used to. Now, I offer my support. Her life did all of that for me.

So, I am trying to think of small ways to celebrate her life between now and Aug. 12, with some kind of bigger celebration that day. I want something people all over the world can participate in because her story touched so many people all over the world. She was so small, yet she touched so many. I am open to ideas if anyone has any.

Thursday, July 8, 2010

Week one of ADHD meds, update on incontinence issue

I honestly admit I was a little scared about what kind of change the medication would have on Tessa. She is very spunky and high spirited, and I did not want to change that. I just wanted her to be a bit more compliant when I asked her to do something, not have so many meltdowns and do better at school.

Her first day on the medication was a Friday. She usually goes and plays for a few hours at my aunt's house (she lives across the street), because my aunt's grandchildren stay over there while their mom is at work. I didn't let her go over there because I wanted to see if she had any kind of reaction. She didn't eat much that day and was very calm, until late afternoon. We were getting ready to go eat with our family, and we were at my aunt's house because she always rides with us. Tessa had a meltdown of epic proportions. She was crying, rubbing her eyes and scratching her cheeks. I almost called the doctor right then.

I decided to give it another couple of days to see if she had another reaction. She had a small meltdown on Saturday afternoon, but nothing like Friday night. She had another meltdown on Monday afternoon, but we are doing well since then. Most of these meltdowns have been late in the afternoon when the meds were wearing off.

I almost can't believe the change in her. She's still spunky, but she minds me so much better. She doesn't pitch fits if she doesn't get her way. She can sit and play with one set of toys for hours at a time instead of bouncing between them. She also doesn't get frustrated. Yesterday, she was playing with her Barbies and dressing them. The strap broke on one of her outfits. Before the meds, this would have been the cause of at least a 30 minute meltdown. I suggested a fix, and she was fine with it.

While Tessa loved to be read to, she would never volunteer to read on her own at all. Yesterday, she grabbed some books out of her room and sat down on the couch and read them. She needed help with some of the bigger words, but she read most of them on her own. I do think the meds are going to help with her problem of processing information.

My biggest issues were her not eating after she takes it, the meltdowns in the late afternoon and how calm she was. She was never zombie-like at all, just a lot more calm than what I am used to. My cousin said it's just because we are so used to her being loud and up. We saw the doctor today, and he agreed.

Tessa had lost four pounds. He said that while she's not overweight, it's not going to hurt her to lose a few pounds. She weighs 69 pounds now, and he doesn't want her to get below 60. I have to weigh her twice a week to keep an eye on it. We go back next Thursday.

We talked about her incontinence issue today. She had to pee in a cup, which she found totally disgusting. She also had to have blood drawn. I was honestly dreading it so much, but she didn't even cry. I thought we might need, oh, 10 people to hold her down, but she did wonderfully. He also sent her for an x-ray of her stomach to see if she's constipated which could cause the incontinence.

He is making her an appointment with a urologist. He thinks she might have something called reflux or a problem with the neck of the bladder. We will see. I just hope it's an easy fix that doesn't require surgery.

Offline for almost a week

Last Friday night, I was all set to write two blog posts, but I first wanted to put a color on my hair and do a little laundry. When I finished, I came back in the living room, sat down at computer and couldn't do a thing.

I had gotten a virus called AV Security Suite. If you see this on your computer, run a virus scan on it before you click on anything else. I use AVG Security for my virus protection, and I probably clicked on the AV Security Suite without even thinking about it.

It wouldn't let me do anything at all. In fact, the only thing I could do was turn my computer on and off. I took it to my computer repair guy, and to make a long story short, he did more harm than good. I finally wound up taking it to someone else, and I got back today. It's like I have a new computer, but I lost a ton of stuff.

Most of it, I had backed up, but some freelance writing I did back in May and June is gone along with the pictures of the day Ella was born. I am heartbroken over the pictures. The writing, not so much as I might be able to salvage some of it from e-mails.

I can't believe how out of the loop I felt without my computer. I felt totally cut off from the outside world to some degree because I get my news online and communicate with a lot of my friends online.

But, now, I'm back and I'll be having my first give-a-way in the next day or two. Keep an eye out for that.

Thursday, July 1, 2010

A new pediatrician and about meds

We saw her new pediatrician today, and I loved him. He came into the room and began talking to Tessa first before he said a word to me. This really put her at ease, and she also loves him a lot. I feel like he totally listened to my concerns and didn't blow us off.

He is prescribing her Vyvanase. Has anyone had any experience with it? My neighbor took it, and she had horrible sweats with it so she moved on to Adderall. My only worry with it is how expensive it is, but if it works and helps her, I will gladly pay the price.

I also wanted to discuss her incontinence issues with him today. Any time Tessa laughs really, really hard, she pees on herself. She tells me that once she starts peeing, she can't stop herself. Brian's mom and a cousin both had an issue with the tubes going from the bladder to the kidney being too short, and my cousin has the exact same thing, too. Brian's mom actually had to have one of her kidney's removed as it had "died," as she put it.

We have to go back next Thursday to see how she is doing with the meds, and he said we would discuss the incontinence issue then. He was afraid it would be too much stress on her today, but he did want to talk about it since the problem always happens during the day and never at night. She has never had one over night accident since she potty trained.

I am very happy with this doctor and am glad my friend recommended him. I just hope we will see a good difference with the medication. When I said in my last post that I was afraid of her being a zombie on medication, I didn't mean I was totally against it. I feel medication has it's place.

I take anti-depressants. I've suffered from depression since college. It helps me, and I take it. I reason that if I had a headache, I would take something for it. Since depression is as much an illness as a headache, I will take the meds for it. I feel the same way about the medication for ADHD.