A Mother's Love

I received in my email today a note from my Uncle Buck. He wrote me something that I just really wanted to share (with his permission of course!). My Uncle Buck is such a good writer as I'm sure you will soon find out. I was really touched by his writing and I'm sure it will make its way into Carleigh's scrapbook. Thank you Uncle Buck!!!

A Mother’s Love

I will never understand the love a Mother has for her children. Today I have finally accepted it is simply beyond my ability to comprehend.

Like so many of us I took advantage of my Mom as a child, and given the gift of hindsight, I probably even did that as an adult. Mom was always there looking out for me. It wasn’t until her final moments that I thought about how much she had done for me. In those precious few minutes it dawned on me that I would never understand why she cared as she did, why she put up with all my mistakes, why she loved me as much as she loved all her other children. She died with me never understanding the love of my Mother.

I was equally dumbfounded later in life when a family heirloom that meant the world to me seemed to have slipped through my fingers once again. Yet there is a lamp in our house today that serves as a constant reminder a Mother's love is not limited to those children she bears. Why was I the one blessed with this special act of kindness? After all these years, words still fail to describe the emotion of that moment. And it convinced me all the more I will never understand the love of a Mother.

Even when I watched my wife and the interaction she had with our sons, I couldn't understand the love of a Mother. Those boys drove me nuts but Becky persevered. I remember when teen choices drove a wedge between father and son, Mom was there making sure the wounded family ties were repaired. While I felt a huge sense of loss when they left our house and later when they married, Becky didn’t waste any time welcoming 2 wonderful young ladies into our lives. When I was convinced I should have done more, Becky knew we had done all that was needed to prepare our sons to lead their own households. How did she know? Why was she right every time? I have no idea. But it pretty much proved beyond any doubt I am incapable of understanding the love of a Mother.

Today I am confronted once more with my inability to grasp the enormity of a Mother’s love. Holly, our sweet little Holly, hesitated not one second when asked if she wanted to carry a child that would not look like other children. She was told her baby would not live as long as other babies are expected to live. She would never see her baby leave for the first day of school, go on her first date, or share that special day when wedding rings marked a new chapter in the lives of everyone who loved her baby girl. But Holly never wavered in her decision. In spite of the hardship, or maybe because of it, she chose to continue a bittersweet pregnancy that tore out the hearts of those who thought they knew what was best for her. I was one of those people.

Holly was not ready for this. It was just yesterday that I watched her and Katrina playing in a small wading pool with my sons. Just yesterday she fell asleep in my lap after a long day of boating and many failed attempts at water skiing. Just yesterday she was a busy athlete on the track and field team, a goofy acting teenager racing to embrace the promise of tomorrow. Just yesterday she married and with Anthony began a family.

It was just yesterday. I was there. I know she was not ready for this.

Yet what I know is not what I see because there stands Holly, glowing only as a happy mother-to-be can. There is Holly, smiling and reassuring all of us she is fine, that she knows this is the right choice. There is Holly, inspiring those who doubted, giving us the strength to carry on. At a time when she should be leaning on us she is instead the crutch a family depends on. How can she do that? Where does she find the strength? She has reminded me once again I will never understand the love of a Mother.

I deeply regret that I will never know little Carleigh. I would like to watch her grow and see her listen in wide-eyed wonder as I argue with her Grandma about whether she looks more like her Mom or more like her Dad. I would like to hear her laugh when I tell stories of her Mom as a toddler and teen.

I would like to tell her what a wonderful Mom she has.

But somehow, I think she already knows all the things I would like to tell her. And I suspect she knows even more because I am certain she understands the one thing I never will: the love of a Mother.

I hesitate to speak of God because I know so little and others are far more qualified than I am to speak of His love for us. But instead of wondering why this happened I choose to believe in His wisdom. I choose to believe that He knew Holly was the best choice to be the Mother of one of His most precious children. I choose to believe that He knew Carleigh would be safe and warm and loved. Seeing the smile of our young Mommy-to-be I know it was the right choice.

I may never understand the love of a mother but today I understand the love of our Father just a little better. He sees what we can’t see. He knows what we don’t know. He understands what I don’t, the love of a Mother.

WH 2009

Oh happy Friday!!

Today has been a great day! I found some cloth diapers online (Kiwi Pie) that I really wanted so I called Anthony to see if I could get some and he said I could! I was sooo excited! Not a whole lot gets me really super excited these days but getting new diapers definitely does. The diapers are a one size bamboo fitted. The site was having a deal where you buy one and get one half off so I got 4 diapers total and some organic cotton doublers too. Next week they are getting new prints in so I might have to swing by and see what all they have. I'll probably be so tempted to get more. I'm selling off some of my old diapers and things I don't use to save up to get some wool covers I found that I like too.

I got some hats in the mail today too from Jennifer (honeyj2) from Cafemom. Thanks so much! I also have some hats I got from some ladies from ABFA-Jessica and Karen. So these are the hats I have so far: (The peach and yellow are from Karen. The striped stretchy ones are from Jessica. The knitted are from Jennifer.)
I'm so glad that we have nothing planned this weekend. Just sit back and relax. Tonight I think we're finally going to watch Fireproof. I can't wait! I've so been wanting to see it. Saturday we're going to go grocery shopping. We'll probably pick up the house a bit too. On Sunday we plan on telling our church family exactly what is going on. Our Pastor and his wife know but everyone else was just told there were complications with my pregnancy. I know we'll get a lot of support. My mom is also coming down Sunday to stay with me for the week since Anthony has training the entire week for work. Let's hope we don't get that snow storm they've been talking about!

OB Appointment #7

Today I had an ob appointment and the dreaded glucose test. Yuck! So I went up and drank the drink. Tasted like flat 7up, which is ok the first couple swallows but as you near the bottom it's not so fun. I had about 3 swallows left of it. The third to last swallow I managed to get down but I could feel my gag reflex working. The second swallow to last I got down and then I gagged and threw it back up-all over my hand, face, and carpet. Luckily, it wasn't very much (although it seems like it describing it). I asked if I had to do it all over again but they spared me and I managed to get the last swallow down. They took me in and got all my stats-weight (116), BP (88/58), and pulse (don't remember). I then did the usual pee in a cup, which was great because I had to go! I then went to my little room to wait for Dr. F. She must've been on the floor for a delivery because she had scrubs on. She asked the basics-swelling, pain, etc. None of that! Everything's good! (Except that annoying heartburn! Thank goodness for Zantac!) She found Carleigh's heart rate with the Doppler and it was beating strong at 140 bpm. Carleigh kept moving around so it was kind of hard to hear it at times. She measured my belly at for me being at 28 weeks it is 25 1/2 cm. So I am measuring behind but I did with Kyndra too so I'm not worried about that. Ideally my fundal height should be around 28 cm because height usually coincides with how many weeks you are. We're not going to get any ultrasounds or anything since I just had one about a month ago and everything looked good then (besides finding out about Carleigh's anencephaly). So then Dr. F left and I sat in the waiting room reading a magazine until the rest of my time was up for my glucose test. They brought me in and drew my blood. Good news! I passed my glucose test! Hooray! No, I didn't know right away. They called me later.

Baby Kicks

One of the things I enjoy the most right now is feeling Carleigh kick around inside me. She is so much more active than Kyndra ever was! (An interesting tidbit is babies with anencephaly seem to be much more active in the womb than babies without this condition. I'm not sure why this is but many moms say so. Maybe it is to remind us that they're in there and they love us.) Sometimes I swear she kicks 24/7 and she can kick pretty darn hard too. She's actually kicking me right now-like she's running her foot (and probably an arm too!) up and down inside me. It feels so neat. I'll sit in the tub with my hot water and just watch her kick at my tummy. Her kicks remind me that right now she is very much alive and well inside her little home. I wish it could always stay that way. But I know the day will come when she will be born and the kicks will cease. How empty I will feel! When days get so hectic I know I need to stop and appreciate her acrobatics because they won't always be there and I will soon long for the day to feel them again.

Duke study

I have heard about the Duke study from several mommas who are in the same situation as me and so I looked into it. I emailed them and said that I'd like to get more information because we were interested in participating. Heidi, who is genetics counselor at Duke, emailed me back. She said that the goal of the study is to learn more about the genetic and environmental factors that cause anencephaly. Participation in the study will not benefit us directly, but it may help prevent this from happening to other families in the future.

This is from the Duke website:

What is Anencephaly?
Anencephaly is one of the most severe forms of a neural tube defect (NTD) and is typically not compatible with life. The neural tube is the developing structure that becomes the brain, skull and spine. NTDs in general are one of the most common birth defects, occurring in approximately 1 in 1,000 live births in the United States. Anencephaly occurs when the top, or cephalic portion, of the neural tube does not close properly during fetal development. This results in a partial or complete absence of the brain and skull. Currently, there is no cure or treatment for anencephaly and the cause is not known. It is strongly suspected that anencephaly and other NTDs are due to a combination of multiple genetic and environmental factors.

Duke CHG Research on Anencephaly and other NTDs
The Duke Center for Human Genetics is currently conducting a genetic study called "The Hereditary Basis of Neural Tube Defects" to determine the causes of anencephaly and other NTDs. By studying families with anencephaly and other NTDs, we hope to identify the genes that contribute to the development of the neural tube. We hope this research will eventually lead to more accurate genetic counseling and risk assessment, improved treatments, better prevention methods, and possibly, a cure.

Study Participation Details
The Duke Center for Human Genetics is recruiting families in which a current pregnancy or newborn baby has been diagnosed with anencephaly. Participation in the study will in no way affect a mother or baby's health or a family's decision-making process. Participation is completely voluntary and free and does not require travel to Duke University Medical Center. Participation involves the following:

• Speaking with a Duke NTD research team member by phone to discuss the study and complete a family medical, pregnancy and environmental history interview.
  
  
• Providing a DNA sample from the pregnancy or newborn that has been diagnosed with anencephaly. This can be coordinated with a woman's obstetrician, genetic counselor or neonatologist in a way that is complementary to the care that the mother, pregnancy or newborn are receiving.
  
  
• Providing blood samples for DNA research from parents and siblings when possible.
  
  
• Giving permission to the research team to review medical records pertaining to anencephaly or other NTDs.

How to Contact the Duke Research Staff
If your family is interested in learning more about this NTD research or in participating, please contact us via one of the following methods:

Phone: (toll free) (866) DUKE-NTD (385-3683)
Phone: (919) 684-0767
E-mail: ntd@chg.duhs.duke.edu

Heidi went further into depth about what would be needed in the email and to contact her if we were interested. So the other day I called her but I didn't get anyone so I left a message. Later in the day she called me back and we talked about the study. Before we can enroll in the study Anthony and I need to read over and sign consent forms. Once we mail those in and they receive them then we are "official". We would need to get a DNA sample from Carleigh, which can either be from the cord blood or a skin biopsy sample. They would also need blood samples from Anthony and I. We can do that though when we go in to have Carleigh. They will send us a kit in the mail that would contain everything we would need to get all collections of samples. Someone would call me at some point for a telephone interview to review my pregnancy and any family medical history. They would also review the medical records of my pregnancy with Carleigh. Once Carleigh is born we will also have to take a couple photos of her so that they can see the degree of her anencephaly. So Heidi is sending me everything in the mail. Anthony wasn't too thrilled about getting poked with a needle but I told him to quit being a baby about it and that he'll be fine. This is a good thing to do. Hopefully over time they can find out some valuable information about anencephaly. Heidi did say that over 200 families have participated in the study. They also study other neural tube defects too. I imagine we will do this so I will have to update our birth plan to include what needs to be done for the study.

My thoughts on anencephaly

According to the scientific/medical community babies with anencephaly are blind, deaf, unconscious, and unable to feel pain. They believe that breathing and responses to touch and sound are just reflexes. Don't assume that this is what I think also. I don't believe that babies with anencephaly can't see or hear. I don't believe that they are totally unaware. I do think they can feel pain. I don't believe that when they move in response to touch or sound that it is just a reflex. The word anencephaly itself means "no brain". This is really a false statement as many anencephalic babies have some sort of brain tissue present. There is so much that is unknown about anencephaly. I think most of what is known about these babies are just "best guesses". The human brain is an amazing thing. There are people who are missing half of their brain but are still able to function. Why? Because the rest of the brain takes over the functions of the brain that is missing. So why can't this be possible for babies with anencephaly?

It is a fact that most babies that are diagnosed with anencephaly are ultimately terminated-around 95%. The thought of this is just so unbearable. Are the lives of these babies worth any less than a baby who is "normal"? The question of terminating never even entered my mind when we found out about Carleigh. Why would I choose to end the life of someone I love very much? I wonder how many parents are pressured into ending their babies' lives when it's not what they really want. So many doctors and people think it is best to terminate the pregnancy because of the outcome. Why is it best? Carleigh is no mistake. She is God's plan for me and I faithfully chose to accept His plan. So many others reject God's plan for them. I wonder how many of those families regret their decision to terminate. Out of all the stories I have read and people I have encountered who have carried to term not one of them has ever regretted their decision....NOT ONE!!!! They cherish the brief moments they spend with their baby and wouldn't trade those moments for anything in the world. I'm not judging those who made a different choice than I because I know that no matter what decision is made it is a difficult one. I think it is a decision often made in haste and with no support. I find it so very sad.

Even today babies with anencephaly are thought of as monsters or aliens. (Can you believe that!?) They are far from these things. They are blessings!! Just because they are not "perfect" or "whole" does not mean that they are not beautiful. They are very precious in God's sight and in mine. I wish very much that Carleigh did not have this defect. I wish that God would perform a miracle and heal her. But I also know that God can do great things through Carleigh and through me. I've accepted His gift graciously and without question. How can I not question God? Because I know that He knows better than I. He sees the bigger picture when I can't. I will never get all the answers I want here on earth. So why torment myself with 'what ifs' and 'whys'? All I can do is be the best mommy I can be to Carleigh while she is with us. I won't lie-it hurts. I have my moments when all I want to do is cry. I think any mommy would cry for their child.

I got our plots

This is a few days late but on Friday I met with Mary Ellen who volunteers for the Springfield Friends Cemetery. We met at the cemetery to look at land for our plots. I was glad she was able to meet me because I has just called her that day because the snow had melted and you could see the ground and now there's snow back on the ground. We did a little looking around and we also looked at the map she had. I finally decided on 3 straight in a line. The land I picked was a little bit in from the road and Mary Ellen said that was a good idea. I don't want to be right on the road (more like a driveway through the cemetery). So once I decided she wrote our names down on the plots and they became ours. She said she'd send the deed to us in the mail. Kinda seems weird that Anthony and I have our plots already too but we had to get them now so Carleigh would be beside us. Plus, I think we got them at a good price. By the time we'll need them I'm sure the price of the plots will be a lot higher than it is now.

Burial Outfit

Today my mom and I went to the Children's Village in Upper Sandusky to see what they had as far as preemie outfits or dresses. I was looking for something for Carleigh for her to be buried in. They didn't really have a big selection at all but I finally settled on one after much thought. It's not quite a dress-more like a romper and it came with a bonnet too.

We also found a pair of preemie shoes there too!

They didn't have any preemie tights there so we'll have to buy those from preemie.com. My mom suggested a sweater too. So we'll probably get that along with the tights in case I decide to put one on her.

Prayer Shower Invitation

You are invited to a Prayer Shower!

We are tickled pink and happy to say,
A baby girl is on the way.
Let's pray for Carleigh, Mom, & Dad.
If you could join us we'd be so glad!

When: March 14, 2009 @ 12:00pm

Where: Wilmington Church of the Nazarene
2193 W SR 73
Wilmington, OH 45177

RSVP: Holly B. at hbatton02@yahoo.com
by February 28, 2009

All family and friends of Anthony & Holly are invited to this shower, both men and women. This shower is to encourage and pray for them and their daughter, Carleigh McKenna. A meal will be served first followed by a small service. If you would, please bring a letter written and sealed to Anthony, Holly, Carleigh, or each of them to show how much you love and support them. We would like those attending to acquire a baby bottle and fill it with as much money as possible-loose change or bills. The guest with the most money in their bottle will receive a prize. All money and bottles collected will be donated to the Clinton County Women's Center.

More Pre-arrangments

Earlier today I called the cemeteries we were deciding on to see what "rules" they had and they were pretty much the same. I talked to Mary Ellen from Springfield Friends first and she was really nice. In my gut I felt like it was the cemetery I wanted to go with but I wanted to see each first before I made the final decision. I called Sugar Grove too and they were ok on the phone. Anthony had said he wanted to go with Springfield Friends before. So after work I drove by each cemetery. I actually went into Springfield Friends but I knew pulling up to it that it was going to be the one. It just felt right. It's in the country and it seems very peaceful. An added bonus is that it is much cheaper too. So that is where Anthony, Carleigh, and I are going to be buried-all right beside each other. I'm going to be getting a hold of Mary Ellen sometime within this next week if the snow melts to go look at plots and decide which ones we want.

We met with Brian again from the funeral home tonight to go over more of the arrangements for Carleigh's funeral. Pastor Mark stopped by for a little bit too before he had to head to church. We finalized that we are burying her at Springfield Friends Cemetery. She will have a steel vault and a steel casket. Her casket is going to be the 2 foot size and white on the outside with lavender shading and be a full (meaning the lid opens as one and not two separate compartments). The interior will be velvet and colored lilac. We're not putting any special paneling in there. I like the sunburst just fine. I looked at the different memorial cards and verses they had but I'm not sure if I'm fond of any of them. So I'm going to do my own search online to see if I like something better. I asked and I can order them plain online and then send them to the funeral home and they'll print them. We started looking over her marker and decided on the color Sunset Red for the granite. Carleigh's marker is going to be decent sized and not one of those laying flat on the ground. We didn't want that at all. We wanted something you'd be able to see. We're going to have her full name and dates on there but that's about all we know right now. I'd like to have some sort of saying on there and maybe even a picture. It's something I'll be looking into. Brian went over the prices and a roundabout total that didn't include the marker and the plots. He'll be sending the figure to my dad, and we made sure we told him after we left so there wouldn't be any surprises. This second visit to the funeral home went better than the first emotionally. We both handled it really well and Brian mentioned to us how we seemed to be filled with the grace of God and he can tell a big difference between us and people who don't have that. It made me feel good that we seem to be having an impact on other people. Don't get me wrong this is a very hard thing to do and it hurts having to plan our daughter's funeral, but we know that God is with us. I hope that we can show others that there is no trial too great that God can't get us through.

On with better news! I got Carleigh's hospital outfit today! Lindsey brought it to work and it is so pretty (and small)! I also got some hats in the mail from Jessica from ABFA. (Thanks!) I also got something else in the mail because I got a yellow card in our PO Box but Shirley (our postmistress) leaves at 1:30pm and I don't usually get home til around 2:30pm after picking up Kyndra from the sitter's and coming home. I'm very curious so I may have to leave work a bit early tomorrow to pick up whatever is waiting for me!

Can I complain a bit!?

First, if you're wondering why I haven't been posting it is because Kyndra has been sick and I haven't had much time to be on the computer when I'm at home. I believe she caught what Anthony had and she's had a pretty rough weekend but seems to be doing much better. Her chest is still congested some but the fever has gone down. I was hoping she'd be able to get over it without me having to take her to the doctor and it looks like she is. I think she was starting to come down with it last Wed when I had her 12 month checkup and when she got her shots it probably overwhelmed her immune system and it came on pretty quick after that. I already had to take a few days off because of the pink eye she had and now this. I have no family down here to watch her so I have to take off work. I wouldn't mind taking the time off except that it is taking away from my PTO and sick time that I've accumulated so far and that I was trying to save for after Carleigh was born. I had about 5 weeks saved up and now I think I'm below 3 weeks. I really hate that. I wish I had more time. :( I am glad that I will get a week of bereavement that is not taken out of my own time but I still wish I had more. I don't know as of yet how much time I will be taking off but I do know that I can only take off what I have saved up. I can't be off without getting paid.

Maternity leave really sucks in this country. You know, in some countries they get a whole year off! Seriously! Just look at this http://www.msnbc.msn.com/id/8715778/. It's just so pathetic that we're supposed to be one of the more advanced countries in this world yet we don't give mothers they time off they need and deserve.

Something I didn't think about

Yesterday Kyndra had her 12 month checkup with Dr. Z. Overall it went well. Kyndra's next appointment will be her 15 month one and it is due in April. I'm actually going to see if we can do it in May instead when she's 16 months because April will just be an emotional time for us and I think it would be better. I didn't set anything up leaving the office and I don't think there will be a big problem having just a month later.

While Dr. Z was still in the room with Kyndra and I she mentioned giving Kyndra some siblings. I told her she's going to have a little sister in April and she congratulated us. Then came the big BUT....I told her she wasn't going to live. I told her that Carleigh has anencephaly and we talked a little bit. She said that her and a few of the other doctors in the office can deal with high risk pregnancies. She asked if we planned to delivery at CMH and I told her we were so I guess one of them will be the ones handling Carleigh after she is born and if she lives long enough. Dr. Z wanted me to go ahead and fax the Level 2 ultrasound I had. She mentioned, too, about a meeting before delivery to go over everything so we will see. After I left the office I called Dr. F's office and asked if they could fax over the ultrasound from Dec 15 when we found out, the Level 2 ultrasound from Dec 17, and our birth plan to Dr. Z's office and they said they would. I'm glad that this was brought up at Kyndra's appointment because it totally didn't cross my mind that to get in touch with a neonatalogist. I'm sure I would've thought of it later but I'm glad it's getting taken care of now.

Some Heartfelt Thank Yous

I would like to say thank you to a few people who have done some very nice things for us.

First, of all a big thank you to our parents who have graciously asked to pay for Carleigh's funeral expenses. We are so very grateful for this wonderful gesture of love as it as lightened a load off of our shoulders.

Thank you to my Aunt Becky and Uncle Buck for the picture. It is absolutely beautiful and so is the poem. It is currently still in the box but we would like to display it at her service first and then hang it in our home. Below is a copy of the print and the poem.

Child of Heaven

Child of heaven come to earth
You just could not stay
This world could not hold you
And so soon you went away.

Like a rare and precious rose
Your lovely soul can't die
Budded here upon the earth
Now it will bloom on high.

You are a child of heaven
And will forever lie
In the arms of Jesus
For all eternity.

Thank you to my Aunt Sherry and Uncle Doug and family for the statue. It is a mother holding a child with angel wings. It is also put away for now until later. We haven't decided yet whether to put it in our flower garden or by her grave.

Thank you to my best friend Lindsey and her husband, Jarrod. They have purchased Carleigh's hospital outfit that I wrote about in the previous post. What a surprise and blessing!

Thank you to several mommies who are members of Cafemom and to some of their family. Jennifer (honeyj2) is going to have her mother-in-law knit a hat for Carleigh as she makes baby hats for the local hospital. Megan (Meg1129), along with the help of her mother-in-law, is making a baby blanket for Carleigh. Dawn (bakersd79) is making a tutu for Kyndra for my maternity photos next month. Kathryn (Kat770) is crocheting different sized preemie hats for Carleigh. These women are extremely generous as they are doing all of this for us free of charge!
Here is the tutu that Dawn made (extremely fast might I add!). It's so beautiful and I love it!

THANK YOU everyone! We appreciate your kindness so much!!

Carleigh's hospital outfit

I have decided what I want Carleigh to wear while she is in the hospital. I found it online at www.preemie.com but I haven't bought it yet. I'll have to see when Anthony wants to get it. It's a little pricey at $24.99 for such a small bit of clothing but I knew once I saw it was the right one. It's designed to fit from 3-5 lbs and so it should fit her good. I think it is so precious and it will be perfect on her and it'll be something sweet to add to her memory box I will eventually have for her.

The Do's & Don'ts for providing support

I know so many people don't know what to say to me. Most of the support that I have received has been positive and I am grateful for that! I thought it might help to write down some things for those who are afraid of saying the wrong thing. I completely understand how difficult it would be to come up with words to someone in my situation. I hope this helps. (Some things may apply after Carleigh passes.)

-Don't keep repeating those famous lines of "It was God's will", "God has a plan in this", "Everything happens for a reason", and "God never gives us more than we can handle". While all of these statements are true they are not very helpful. I know for some mothers it really bothers them to hear statements like this. As for me, they really don't bother me as much but hearing them over and over does get a little tiring. Do know that I trust God completely in our journey and since learning Carleigh's diagnosis my faith has not wavered but has grown stronger. If you are praying for us just let us know. Prayer is such a powerful tool and to know that we are in yours brings me comfort.

-Don't say "You can always have another one", "Be grateful that you have Kyndra", "Well, at least she passed before you got too attached" or "Just enjoy the time you have left with her". Carleigh is my precious daughter and she is not disposable. If I had a choice of losing her or stabbing my eye out with a fork I would take the fork. I would die for her just as you would die for your children. Yes, I am grateful that I have Kyndra and that she is healthy. Look at it this way-if your mother died in an accident and you grieved would that make you less grateful to have your father? I love Carleigh very much and was attached to her the very day I found out I was pregnant with her. I very much enjoy having her kicking inside of me. I don't take a single day we have together for granted. Do say things like I am a wonderful mother to Kyndra and Carleigh. Every woman likes to hear that they are a good mommy.

-Don't say things like "Things will go back to normal before you know it", "Time heals all wounds", "You'll be okay", or "Isn't it time you got over it?". Grief is not an emotion I enjoy. I wish I never had to experience this road but I am and it will be a part of me forever. Do realize that any grief I experience will have to fade on it's own and not on a specific timeline. I may still feel the effects of Carleigh's death for years to come and important days such as her birthday, Mother's Day, and holidays may be harder for me. I will be suffering a death in my family and not just some medical condition.

-Don't imply that Carleigh is an angel because she is not. She is a child of God. Humans cannot be angels and it says so in the Bible. I know a lot of people like to think of babies being angels to possibly make it easier to handle. Carleigh will not be "an angel in Heaven looking down over me". She will be happy in Heaven with Jesus and be carefree and that is exactly how I want it for her.

-Don't say that you understand how I feel when you really don't. Unless you are carrying a child who will die, you really don't understand how I feel. Do realize that even if you have experienced loss, or are going to, that everyone experiences grief differently.

-Don't pretend that this isn't happening and don't change the subject when I bring it up. If I'm talking about it then it means I want to. Pretending that this isn't happening to me just makes me feel alone. Also, don't try to avoid me or be afraid that mentioning Carleigh will make me feel sad or cry. At times I may be ok and other times I may break down. It's ok for you to show your emotions in front of me. It shows me that you care for me and Carleigh very much. Do acknowledge what is happening to us. Sometimes saying "I'm sorry" is enough. You don't need to be eloquent with your words. Just say it and mean it and that's all that will matter. Receiving kind notes, flowers, and gifts are appreciated but don't be resentful if I don't respond with a call or a thank you note.

-Don't say "I'm sorry for your loss" when my baby is still very much alive. This phrase is not appropriate when Carleigh is still kicking inside of me. Please save it for after she has passed.

-Don't be afraid to share your good news with me. I am happy good things are happening to you and your family/friends. Just remember that your good news will not cancel out my grief or make things better. Do realize that nothing you say will make me sadder than the reality of what will happen to my child.

-Don't suggest donating her organs. How would you feel if you were asked this about your child, especially when she was still alive? Do know that organ donation has caused an ethical debate because of the difficulty in determining brain death since babies with anencephaly usually have a rudimentary brain stem. This would be a personal decision and it doesn't need pushing.

Please remember that this is the worst thing that I have ever had to experience. It is going to take me awhile to figure out how to live with it so bear with me. It is usually the simple little things that you say or do that mean so much. It is wonderful to know how much you care. Also, never underestimate how much a hug helps.

What Choice Is This?

My Aunt Becky sent an email to my mom with a poem she had found. It was written by a mom whose baby was diagnosed with anencephaly. I think it is really good.

What Choice Is This?
They say I must make a choice to terminate and have you die now, or carry you and have you die later. What kind of choice is that? If I really had a choice you would not die at all. I wish you could stay inside of me where it is safe and warm. That would be my choice for you. When I think of making choices for you, I think of piercing your ears or not. What color dress you will wear. What school I will put you in. Not die now or die later. Dying is not a choice. Who would willingly choose death? If your death must be, it will not be by my actions. I will have no part in it! I love you and could not be the cause of your death. Some say it would be easier to terminate. Easier for who? Not me and not you! For them, so that they don't have to look at us with my big belly and wait for death to knock on our door. I loved you before you were sick and your being sick hasn't changed that. Hold on, sweet baby, and fight for your life. I made my choice before you were conceived when I asked God to give me a child. I promised to love and care for you. This I will do for as long as God lets me. A choice is usually something that has two different endings. So why does my choice have only one? Your death, either way. The only choice that I have left is that I will NEVER forget. I'll love you forever.

(Brittany Ann, whom this was written for, was diagnosed with anencephaly on 4/12/94 and was born to Marylynn & Dan Kalevich and five siblings on 6/1/94. She survived for 29 minutes.)

25 weeks

Yesterday I turned 25 weeks. Just 15 weeks to go til I hit 40. I asked Beth at work today if she had time if I could get some ultrasound pics of Carleigh and she said she could do it around 11 am. (Beth is the tech who did my ultrasound when we first found out about anencephaly.) So Lindsey and I went back around that time. Carleigh was such a little wiggle worm like always! She did not want us to see her face! She had her arms up there right across her face so Beth couldn't get a good front picture for me. That's ok because I wasn't surprised. She's always been like that and Kyndra was the same way! Toward the end she did get a little bit of a profile pic for me, which I love! I appreciate Beth scanning me very much. I love seeing her move and kick around on the screen. It brings me a lot of joy! Here are her pics:Yesterday I turned 25 weeks. Just 15 weeks to go til I hit 40. I asked Beth at work today if she had time if I could get some ultrasound pics of Carleigh and she said she could do it around 11 am. (Beth is the tech who did my ultrasound when we first found out about anencephaly.) So Lindsey and I went back around that time. Carleigh was such a little wiggle worm like always! She did not want us to see her face! She had her arms up there right across her face so Beth couldn't get a good front picture for me. That's ok because I wasn't surprised. She's always been like that and Kyndra was the same way! Toward the end she did get a little bit of a profile pic for me, which I love! I appreciate Beth scanning me very much. I love seeing her move and kick around on the screen. It brings me a lot of joy! Here are her pics:




Monica from MBC called me today right before I was leaving work. We really didn't go over much. I told her about Carleigh and that we would be delivering her at the hospital. I also told her that Dr. Fauley said she was going to copy and forward my birth plan to the unit. I didn't have any questions for her so that was the end of the conversation.

On a lighter note, tomorrow is Kyndra's 1st birthday. Happy Birthday my little princess! I'll be sure to eat some cake for Carleigh. :) The past year has just flown by and I can't believe she is already 1 when it seems just like yesterday she was only a baby. We are having a party for her at my mom's house. Just a few family and friends coming to celebrate. Oh, and Lindsey, Kyndra thanks you for the Goodmama diaper you bought her!

Our Birth Plan

Yeah, it may seem a little early to have a birth plan, but you know me..... I am posting it here because when other parents posted theirs it really helped me to develop mine. I looked at quite a few of them and took ideas from many. Some instances I changed the wording to best fit us and other times I left the wording the same because it was perfect. I'm hoping my birth plan can help someone else who may be in a similar situation.

Birth Plan

At 21 weeks into our pregnancy we were devastated to learn that our daughter, Carleigh McKenna, has anencephaly. We realize that Carleigh will look different physically and will have facial anomalies. We hope that everyone can see her for what she is, our beautiful little baby. We may only have seconds or minutes with her, but we may also be blessed with hours or days. As Carleigh’s parents, it is our greatest wish to be able to cherish every moment we have with our baby, in a loving and caring environment. We have compiled this list of requests and wishes regarding her care in order to make this experience as easy as possible for all involved. Please do not hesitate to ask us for clarification if it is needed. Please don’t mind if we change our wishes at any time. Our wishes all revolve around our need to spend as much precious time with Carleigh as possible and to prevent her from suffering during that time. Our wishes are as follows:


1. We ask that our daughter be referred to as Carleigh.
2. We wish to have a sign placed on our door that designates what type of situation Carleigh’s birth is. We prefer not to have extraneous staff entering our room without speaking to our nurse first (i.e. housekeeping, dietary).
3. If possible, we request nurses specifically trained in bereavement.
4. We are planning on a vaginal delivery. We prefer not to have continuous fetal monitoring during labor and delivery unless we request it. Periodic monitoring of heart tones is preferred. In the event that Carleigh’s heart tones are undetectable or decreased we do not want an emergency cesarean section. However, we do realize that if one is necessary to protect Holly, we would like Anthony to stay with her at all times.
5. Holly would like to freely change position during labor. Suggestions regarding positions for laboring and later for birth are welcome, in the hopes that a proper position can help to diminish pain and make contractions more effective.
6. Assuming they do not rupture on their own, please do not rupture the amniotic membranes artificially. The membranes and fluid will help protect Carleigh's head during labor and delivery. We feel this will increase Carleigh's chances of being born alive.
7. As long as it is safe for Holly, we want her to be able to hold Carleigh immediately following delivery. If Holly is unable to hold Carleigh, we would like Carleigh to be handed to Anthony. We wish to cherish all the time we have with her. Every second counts.
8. We would like mechanical assistance to be used only temporarily to initiate Carleigh's breathing. We do not want any extraordinary measures taken to maintain breathing or to initiate her heartbeat.
9. Since Carleigh is going to be with us for such a short amount of time we want every second possible with her in our arms, beginning from the moment of her birth. Please delay (or even prevent if possible) any procedures that can be put off until later. If any procedures must be done we ask that they be done while Carleigh is in our arms.
10. We would like Carleigh to be kept warm with the use of kangaroo skin-to-skin care, warm blankets, hats, or the radiant warmer if needed.
11. We do not want to have any routine admission medications given, such as erythromycin ointment, or Vitamin K, nor do we want her blood sugar monitored.
12. We ask that you give us privacy, without abandoning us. Encourage us to do whatever feels right.
13. We do not want Carleigh to be taken from the delivery room at any time, by any person, for any reason.
14. If Carleigh lives long enough we would like to feed her. Our first preference is breast milk. If Carleigh is unable to nurse, Holly would like assistance in expressing colostrum/breast milk to give to her either by spoon or bottle. If this doesn’t work we want her to be tube fed.
15. In the event that Carleigh does not die immediately, or soon after birth, we may consider having an IV inserted for the administration of pain medication. We wish to make Carleigh’s time on earth as pain-free and comfortable as possible.
16. In the event that Carleigh is experiencing severe seizures and seems uncomfortable or in pain, we may consider the administration of anti-seizure medication.
17. We want to have Carleigh baptized or dedicated to the Lord at our request. Pastor Mark B----- will be present to assist us with this.
18. We want the nursing staff to weigh and measure Carleigh when we request it. Should we forget to request it, please do it prior to her leaving the hospital.
19. We would like the opportunity to give Carleigh her first bath.
20. We have brought clothing for Carleigh, which we would like to dress her in. We do not want these clothes to be removed at any point or by any other person than her parents. Carleigh is to be wearing these clothes when she leaves the hospital.
21. We anticipate that Carleigh will die during our time in the hospital. When this happens we want her to be with her and holding her in our arms. When she has passed please notify staff members who will come in contact with us. Please do not take her away from us after she dies. We will let you know when we are ready. If we are blessed with the opportunity to take Carleigh home with us please give us advice on how to feed her and care for her head (with dressings etc.).
22. Please do not allow anyone in our room without talking to us first. We would like to have the option to bring our family and children to the hospital to meet Carleigh and spend time with her. We ask your assistance in keeping them updated as we request it. We might need your help with phone calls and getting visitors in when we are ready. Carleigh has family that is very eager to meet her. If possible, we want them to be able to spend time with Carleigh while she is still alive. Time is of the essence for us and we do not want any avoidable regrets or missed opportunities.
23. Any keepsakes that we leave with Carleigh, such as blankets, loveys, and jewelry, are to remain with her at all times, even when she is taken from us. These items are to be placed in the casket with her.
24. We do not want Carleigh to go to the morgue at any time. We request that the hospital contact Fisher & Edgington Funeral Home directly when we are ready to say goodbye to Carleigh. We wish for her to be picked up directly from us or the nursing staff and be taken by a staff person from Fisher & Edgington Funeral Home. We have made prior arrangements for this. Fisher & Edgington Funeral Home can be contacted at (937) 382-xxxx.
25. We have contacted Kim L--, who is affiliated with Now I Lay Me Down to Sleep, a bereavement organization, and have arranged for her to come to the hospital and take professional pictures of us and our baby. We ask that you accommodate her in anyway that is helpful. Her number is (937) 382-xxxx. Other family members will or may be present to take additional pictures and video.
26. If any caregiver has a suggestion or an idea that you think may be helpful, please share it with us, as there are many things we haven’t thought of.
27. If any nurse, doctor, or other caregiver on our team is uncomfortable with any of this, please excuse yourself from our care if possible.
28. We would like to have as many keepsakes and mementos as possible. Please save the following items for us to take home:

-the bassinet card

-hats

-baby blanket

-any photographs taken by the hospital

-hospital ID bracelet and cord clamp

-hand and footprints (we also wish to have footprints put in books we have brought with us)

-mold of hands and feet (we have kits with us)

-lock of hair if possible

-clothing Carleigh may have worn

-heart rate/contraction strips from any monitoring

-and any other things you think we may wish to have

This is a very difficult time for all of us. We truly appreciate your help and support, and ask that you understand the varied range of emotions we may experience. We also appreciate and find comfort in your expressions of grief, so please do not hesitate to show your emotions in front of us. We have tried our best to prepare for our short time with our little Carleigh. Saying “Hello” and “Goodbye” in such a short period of time will not be easy. With your help and support we hope to make this time as meaningful as possible.

OB Appointment #6

Today I had my 6th OB appointment and my first since Carleigh's diagnosis. It went just fine. Got the usual stuff weight, BP, pee in a cup, etc. As for weight, I am still at 113 lbs (according to their scale). I have not gained any weight since my last appointment. I'm a little concerned about that. So I've only gained 4 lbs this pregnancy and I'm 25 weeks. Eeek! Hopefully next appointment I will have gained at least something. My BP was 102/60. I was yacking while she was taking so that's why I'm assuming it was over 100 because usually it's below that. I gave them my FMLA papers and Carleigh's birth plan for Dr. F. And then I went to my room.....and sat.....and waited. You know how it goes. Dr. F came in and asked how I was doing. "Ok," I said. She asked how the trip to Hawaii went and asked if I had any pain or swelling anywhere. Nope, none of that! She checked Carleigh's heart and it was beating strong! What a wonderful sound! She also measured me and I am measuring behind, which is no big surprise since I was the same way with Kyndra. Dr. F said that she wasn't going to do anything about it. By that she meant like ultrasounds and the like. When I measured small with Kyndra she ordered periodic ultrasounds to check her growth. That was fine with me. Also, she mentioned if we had to deal with preterm labor this time around that we probably wouldn't take measures to stop labor like with Kyndra and I wouldn't get the NSTs (non stress tests) like I did with her too. She asked if this was ok and I said that I wasn't sure. I don't know how I'm going to feel at that time if this would happen. Perhaps I would want them to stop my labor and maybe I would tell them not to do anything. I told her it's just something we'll deal with at that time if it should happen and she was fine with that. I also asked her when would be the best time to induce. She basically told me that we would do it whenever I wanted to. So I am going to carry Carleigh for as long as I can. I know that if I would happen to develop poly I could get VERY uncomfortable and there could be increased risks. In that situation I may consider inducing a little earlier but I would at least like her to be full term. But who knows what will happen. Dr. F said she would look over Carleigh's birth plan and she's also going to make a copy of it and forward it to MBC (Mother Baby Care).

I got a cookie!

Another productive day for me. I know it may seem like I'm really getting things done and am super organized and just to let you know...I am. :) I like things to be planned and I have the habit of getting it done as soon as possible. That's why once we found out about Carleigh's anencephaly I started planning right away. Today my mission was to look into 3D/4D Ultrasound places and decide which one I want to go with. There's quite a few in Ohio. It came down to Ultrasona, First Expressions, and Envision Imaging. I decided to go with Envision Imaging. They are located in Columbus. Ultrasona is where Lindsey had her 3D/4D done for Alexa and she liked them and the neat thing they do is they can put your baby's heart beat in a bear so you always have it. I really like that idea but not everyone at Ultrasona is a board-certified sonographer. I probably could've requested a registered one but Lindsey and I just felt good about Envision Imaging. (But I really like that bear idea!!!)

I called Envision and asked them a few questions. I double-checked to make sure all their sonographers are RDMS and they are, which is great. I feel more comfortable with someone that is certified doing my scan as I am not going to be your run-of-the-mill ultrasound. I asked also about their prices because on the internet they had fall specials listed and the lady on the phone said the prices were still good. Woohoo! The package I will be getting is normally $215 and the fall special has it at $190. This includes a 20-25 minute session, limited diagnostic report sent to my provider, custom labeled DVD or VHS of my session set to music, gender determination (upon request), 2 black and white 2D pictures, 6-8 black and white 3D pictures, 4 4x6 color 3D pictures, custom labeled CD with all color 3D images taken during session, gift bag with hundreds of dollars of savings on baby and maternity items, $25 off any future 3D/4D session, and a free return session if they are unable to obtain facial pictures of our baby.

I asked the lady on the phone how they deal with situations where the baby has a birth defect. She said that my provider has to know about the defect and it has to have been previously documented, which both are true for me. She then inquired as to what defect it was and I told her anencephaly and then she asked what that was to make sure. I told her and then she knew. She said she was sorry and I thanked her. I went ahead and made my appointment for February 11 at 7:30pm and she made a side note of our situation. I made the appointment late enough so Anthony wouldn't have to leave work early to go. We'll probably be their last appointment of the day. I'm very excited for this and I can't wait to see Carleigh in 3D/4D! I think it will help us to be able to get a good idea of the extent of her anencephaly. I think it will better prepare us for when we finally meet her. We can have family and friends go with us. I believe we can have up to 8 go so I will ask to see if some want to share this experience with us. The website is http://envisionimaginginc.com/.

Anthony got home a little later today because of the roads. It's been snowing since earlier today. As he's marching up to the door I spot a Great American Cookie box in his hand. Of course first thing out of my mouth when he opens the door is "Hey! You got a cookie! Is that mine?" lol It did end up being my cookie. I was quite excited! It was a cookie slice with the chocolate and vanilla frosting. Yummy! I'm sure I'll be sharing it with him and Kyndra. Anthony said he got me the cookie to say that he's sorry for wanting me to induce early at 30 weeks since it's not what I want. He said he also realized it's not what he wants either. I'm so grateful for such a nice gesture!! I love my hubby!

By the way I've heard that a few people wondered why Anthony wanted me to induce at 30 weeks. No, he's not a big meanie. He was just worried about me. He didn't want me to continue the pregnancy with Carleigh if something was going to happen to me and inducing early would help ease his mind about things going wrong. This pregnancy should continue just like any other and has the same risks as any other "normal" pregnancy aside from increased risks from the problems I had with Kyndra's pregnancy and the increased risk of polyhydramnios because of Carleigh's defect. Polyhydramnios is an increased amount of amniotic fluid because sometimes babies with anencephaly cannot swallow as well as "normal" babies. Since babies swallow the amniotic fluid while their in the womb if not enough is getting swallowed then there will just be more of it. Poly itself has a whole other set of possible complications too but you can't sit and worry about the what ifs. Gotta take it as it comes.

What today brought

Today I was home again with Kyndra because of her pink eye. I stayed home on Monday and Friday too. We didn't do a whole lot. Mostly lounged around. I unloaded the dishwasher and folded some towels.

I called Kim who owns Mud Pie Photos. I had previously sent her an email informing her of our situation. She is affiliated with Now I Lay Me Down To Sleep. For those of you who don't know The Now I Lay Me Down to Sleep Foundation (NILMDTS) is a network of volunteer photographers who provide infant bereavement photography for families at no cost. I told her in the email that I would like for her to be our photographer when the time comes and that I'd also like her to take some maternity photos for me. So I called her today and she was very nice. We set up a date and time for the photo shoot-February 18 at 6:30pm. Later in the evening is better that way Anthony can be there too. Kim informed me that my maternity session would be free, which I am very grateful to her for. If we do want to purchase photos later she will even give us a discount. Kim photographed my best friend's (Lindsey) wedding and she said she did a really great job and was super nice. I think Kim is going to be great and I can't wait for our photo session. I should be around 31 weeks at that time.

I called Monica today also. She is a nurse on the Mother Baby Care Unit at CMH (the hospital where I work and where I will also be delivering). I am to meet with her some time this week to go over things about the birth. I already have my birth plan ready and want to post it but I'd like to go over it with Monica first in case I have left anything out. Monica is trained in bereavement and such so I am hoping she can help. I called the number Kathy gave me but it didn't work so I knew she was working today so I called the hospital but she was in a delivery so I left my name and number for her to get back to me. I probably won't hear from her tonight but hopefully I will tomorrow.

I finished the book I was reading on Sunday. I was reading Waiting With Gabriel: A Story of Cherishing a Baby's Brief Life by Amy Kuebelbeck. What a good book! For so long I had been wanting to read this book. How ironic that I can now apply circumstances such as this to my own life. I do recommend that others read it, especially if they want a little insight into the emotions one goes through when carrying a child that will not live. I do plan to pass this book on to some of my family and friends.

Pre-arrangements

We met with Brian at Fisher & Edgington Funeral Home to go over pre-arrangements for Carleigh's funeral. I kept it together better than I expected. We met at 6:15pm and were there for about 1 hour. Our Pastor, Mark B, was already there to help support us. We went in and Brian greeted us and formally introduced himself. He said he was sorry for our situation and what we had to go through. Evidently, Mark informed him somewhat of our situation so we didn't really get into that. We sat down and started going over things. Brian took down information about us and our families for the obituary. We will probably have listings in Findlay's and Carey's papers (our hometowns) plus Wilmington's.

Brian went over all the expenses with us. For babies, transportation and professional services, like embalming, are free. We decided that we are going to have the service itself at our church since the home can only hold 75-100 people and we really don't know how many to expect so we'd rather be on the safe side and have the extra room. We will probably have a visitation the night before the service. I don't know how many people plan on coming to the visitation but we're going to have it anyway. We want to have the service on the weekend so more family will be able to attend. Services on the weekend cost more but that doesn't matter. I would very much like to have an open casket. We'll have a bonnet on Carleigh's head so no one has to see that. I hope that during delivery she doesn't get much facial bruising. If the bruising is bad then we may rethink the open casket.

There are 2 cemeteries we are deciding on: Springfield Friends and Sugar Grove. Sugar Grove is located in town and is more expensive than Springfield Friends. Anthony prefers Springfield Friends but I want to go see each one and see the different rules and visiting hours of each before I decide. When we buy Carleigh's lot we are also going to buy ours that way we will be able to be beside her. If we wait later this may not be possible. We went over "cash advances", which is services the funeral home will do for us (newspaper notices, getting copies of the death certificate, grave marker, cemetery, flowers) and how much they would cost. It's nice that they can take care of these services for us so we don't have to.

The part that got to me the most was the caskets. Brian brought out several examples. One was a plastic-type one with an included vault and then a styrofoam one. I did not care for either of these, especially the styrofoam, but I know he has to offer them. He then showed us the booklet with the different types of caskets we can order. I started crying. My little girl is going to have to go in one of those and I don't want her to. It gets to me now just thinking about it. We didn't decide anything then on caskets or vaults but have since decided we are going with a steel vault and most likely a steel casket. Don't know which steel casket yet though. Copper is the best you can get I guess but the price is outrageous for both the vault and the casket so we didn't even think about getting that kind.

I asked Brian that once she has passed if they will come to the hospital to get her and he said they would. I don't want Carleigh going to the morgue. I want her in my arms until she is taken to the funeral home. If by chance we are able to take her home with us then we will have to call the coroner to confirm she has passed and they will come to our home and get her. We set up a follow-up appointment on January 21 so we have time to think about some of the things we want or to come up with any questions for him. Kyndra behaved pretty well during the visit. She mostly played with her toys until she messed her pants and got hungry. Pastor Mark prayed for us before we left, which made me cry. We drove home and talked about a few things. I had Anthony call my dad and let him know about some things since he is paying for it.

I kept wondering beforehand how I was going to get through the meeting without breaking down. I am amazed at the strength that God gave me.