I am a wife and mother of 2 beautiful little girls and one precious angel on the way. I have been with my hubby for 11 years and married to him for 7 yrs this August. I am currently 24 weeks pregnant with a precious baby girl who was recently diagnosed with Anencephaly. It was hard at first to swallow, but I have come to terms that this is God's will and he believes that I am strong enough to grow and nurture and love his new little angel before he takes her to heaven to be with him. I am blessed to have this little girl inside of me as well as having such a loving and supportive husband and 2 beautiful little girls who are 6 and 3. Their names are Makailyn Elyse (6) and Makenzie Jean (3). If you would like to know anything else about me do not hesitate to ask me.
I have been pretty busy these past few weeks. My youngest daughter just celebtated her 3rd birthday last Saturday the 23rd of May. My father is in poor health once again and I have been taking care of him. Now with me and my family. We have our good days and bad days. Here lately I have been having more bad than good. I think that it is all of the stress that I have been under and all of the worrying I have been doing with my daughters and my dad.
My oldest daughter Makailyn is just starting to get over Strep Throat that she was diagnosed with on my youngests birthday. My youngest has been sick for almost 2 weeks with a cough and congestion in her head and I believe chest also. My father is still trying to get over pneumonia which he has had for over a month now, not to mention having open heart surgery in December of 2008. Now my oldest has to have her tonsils looked at because half of her airway is blocked, so I have a feeling that she will have to have them removed before the summer is over. If it is not one thing it is another these days. When it rains it pours is what my Gran used to say!!!!!
A good note is I went to my oldest Nieces graduation last night and had a nice time with my family. I am so proud of her. She graduated with Honors!!! So that makes me so happy!!! Also on Monday, memorial day, we went to my sisters and had a small cookout with family. I really enjoyed myself so much. I can not wait to do it again. Now if I could just get them to open up and talk about the baby a little more. I dont want them to feel like they cant talk about her around me. I want to talk about her. That helps me so much.
Speaking of the baby......I have had an overwhelming abundace of gifts coming in the mail from so many wonderful people all over the US. I recieved her cute little outfit that we are going to dress her in after she is born in the mail on Saturday. Monday I recieved her handmade pink blanket and then yesterday I recieved her burial gown and bonnet. I am so blessed to have so many people who care for her and I and our family. Thank you so much for the generosity. I thank God everyday for the blessings that I have recieved. I am going to take a few pictures of the items and post them on here for all to see. She is going to be such a beautiful little angel!!
May God Bless you all and keep you safe. Thank you for all of the support and prayers. They are working and helping us through this incredible journey............
My youngest age almost 3 never ceases to amaze me! Today I was looking for things online for the baby and happened to be looking at a little stuffed lamb that sings Jesus Loves Me. She ran over looked at me and said Mommy my baby sister needs that. Will you by it for her? She then started asking questions about her name and then told me that when she is born she will die. I said yes, and asked her if she understands that she will not come home and live with us. She looked at me all wide eyed and said yes Mommy she is going to live pointing up with Jesus. I told her she was right. She then added Jesus is going to come take her with him. She then asked me again to buy her that lamb and said please she needs one. I had a hard time fighting back those tears. but could not any longer when she went on playing. and they say she does not understand because she is too young.
I went to the Dr. on Monday for my monthly check up. It was not to bad, Its the first one since the diagnosis I was waiting on the tears to start flowing when She began speaking about her. I was fine for the first few mins of talking and then could not hold it in any longer. She apologized and hugged me and said that she was sorry for making me cry. She even has a notice posted in the back office for all of her employees about my situation and to watch what they say to and around me when I am there. She is such a wonderful Dr. I am lucky to have her. I believe that she is the best in my area!!
I also talked to a pastor the other day and that helped me alittle bit. I just have to keep up my faith. I know that I was chosen for a reason and he trusts me to carry his new little angel. Thank you again for reading my story and showing your support for what I am doing and for all of the prayers that I am recieving. They are greatly appreciated so much!!!
Hi all. I am having a pretty good day today. The sun is shinning and the rain has stopped for now. It is supposed to start back up though. Hubby is finally able to mow the jungle out back. It's just me and my Kenz now. She is eager to go outside and play. She has not been able to go out for over a week and its driving her nuts. Our littlest is quite active already this morning. She tends to prefer the left side of my belly. She keeps jabbing my bladder and it hurts, but I am enjoying every little movement she is making. I found a website called the Caring Bridge and made a website about our journey. Here is the address it anyone would like to view it. https://www.caringbridge.org/visit/babyspiker
Well I am going to have to get off of here and start to clean alittle while I have to mojo to do so. It doesnt come often. Thank you again for all of the prayers and support!!! We love ya's!!!
Well today makes 1 week since we found out about our precious angel. I did not sleep to well last night, and woke up very nauseated this morning. Every little thing today has me thinking about the future. I know that it is not going to get any better, but I guess I just have to get used to these kind of days. I just want to let everyone know that I appreciate all of the support and prayers that I have been recieving. They are what's keeping me going. I know that this is God's plan and he will take care of me. I am going to get off of her for now, my husband just got home from work and he is hungry and so is my little munchkin. I cant keep her out of the gummies and cookies. I need to fix her something nurishing. Thank you again.
We just want everyone to know that we appreciate all of the support that we are getting. If it werent for the support and prayers I dont know what we would do. I have come to terms with this and that it is God's will. He needs her more than we do, and I think that my mom needs her too. I know that she has faith in me that I can get through this. I feel her beside of me and she will help me get through this. Her Grandma will hold her tight until I get up there with her. I am just thankful to have her for the little time that I do. I will cherish every second of each and every day and every little hiccup and kick. (I tell you what she can sure kick) I want God to determine when I am ready and strong enough to let her go and when he is ready for her. Thank you all once again. I love each and every one of you!! I will keep you posted on the pregnancy. I go on May 11th to talk to Dr Harrison about what we want to do. She said that she will support me with whatever decision I make, because the best decision is the one we make. She is the best Dr and I love her for the support that she has given us. People say bad things about her, but she is really great!!!
Well I am back home. And it is not good news once again. They confirmed that yes she does have Anencephaly. He asked us what our plans where and we both told him that we are going full term with her. I have thought and thought about what to do and we have came to that conclusion. Alot of people are against this, but this is decision. I want to be able to spend as much time with her as possible and I am the one keeping her alive. I do not believe in abortion at all and that is not an option. I also do not want to be the one responsible for her death, I want her to die naturally when God chooses to take her with him. It is up to him how long I have with her and I am greatful that I have had these past 5 months with her. I can go the next 4 too. I know that it will be hard, but we have that much more time with her and that much time to prepare ourselves for what the outcome is. This is Gods plan and I have to except that. I feel blessed that he has chosen me of all people to nurture and care for this precious angel. We want to thank every single one of you for the prayers and the well wishes. This support is amazing and I am so thankful to have family that cares so much and loves so much. I know that we never get to see each other, but that does not mean that I do not love every single one of you's. Thank you once again. I will keep you updated on the pregnancy. Bless all of you!!!! Here are some lyrics to a song I found.
I Will Carry You These are the lyrics to the song "I Will Carry You", written by Angie and Todd Smith for their baby girl, Audrey Caroline. There were photographs I wanted to take Things I wanted to show you Sing sweet lullabies, wipe your teary eyes Who could love you like this People say that I am brave but I'm not Truth is I'm barely hanging on But there's a greater story Written long before me Because He loves you like this So I will carry you While your heart beats here Long beyond the empty cradle Through the coming years I will carry you All my life And I will praise the One Who's chosen me To carry you Such a short time Such a long road All this madness But I know That the silence Has brought me to His voice And He says... I've shown her photographs of time beginning Walked her through the parted seas Angel lullabies, no more teary eyes Who could love her like this I will carry you While your heart beats here Long beyond the empty cradle Through the coming years I will carry you All your life And I will praise the One Who's chosen Me To carry you
I was searching a little bit ago and came across this blog and it gave me hope. If anyone is interested please check it out. I dont know if my finding it within 5 mins of searching, after praying for her to be ok, is a sign from God or what but I would like to think about it that way. I go to morgantown for a high definition ultrasound friday morning and then go see the high risk dr. Please keep the prayers coming. I am in dire need of them. That is the only thing helping me to cope with this. Knowing that all of these people friends and family care about us that much. It means so much. I have been thinking of some names for her and here are a couple that I have came up with. Elizabeth Faith and Isabella Grace. I want something that has a spirital meaning like of God or something like that. These names just stick in my mind.
Here is her ultrasound pic from the other day.... she is perfect to me....
Well, I am having a hard time typing this, but they have diagnosed our baby with the worst neural tube defect possible. Oh and its another girl. She has Anencephaly (half of a brain) She will not make it. We now have the hardest decision in the world to make. We have the option to be induced now or wait until September. Dr Harrison is calling the Dr from WVU today and asking his opinion and whether we should go out there. I have another appointment with her on May 11th and we will I guess make the decision then. I am at a lose for what to do. I dont want or believe in abortion, but I already know the outcome with this pregnancy. She will either die before I go into labor or during or shortly after birth. I dont know if I am strong enough to go through either. I feel like Im dying inside with every little kick I feel the pain gets worse. I dont even know how to tell Makailyn. Dr Harrison was holding back the tears and so was everyone else in the office. She and her receptionist held me and comforted me too.
I know and understand that it is a screening and not a diagnostic test, but it still makes me worry. I know that I will love and cherish this baby no matter what. I am just worried about how my husband and his family will handle it if something is wrong. I know that I should not care about how other people are going to take it, but I do. They are the type of people who pick favorites and treat the children differently, Im sad to say. I just dont understand how people can act like that. Thank you again for all of the love a support. I really need it. These past few months to a yr have been rough and then this. I hope it gets better!! Hugs!!!!!!!! Love ya's
Dr Harrison called me this morning and told me that my Alpha Fetal Protein is still really really high, so she is concerned about the baby now. I go tomorrow for an ultrasound to see how it is doing and then she said that we are going to have to be sent out of town to get a high definition ultrasound done. I have just been so sick on my stomach all day today and have had a headach from worrying about this and dad. For those of you who do not know what im talking about; I had a Triple Screen ran when I was 16 weeks pregnant and that came back abnormal so I had to wait until I was 18 weeks to have a retest to make sure they did not do it too early. So I had it done last monday and it was higher. The alpha fetal protein is detected in the mothers blood when the babys liver makes too much. and the baby's that make too much are baby's who are at a high risk to have a neural tube birth defect like Spina Bifida or Anacephaly (half brain). The screen does not diagnose your baby as having it, but that you are at a higher risk of having a baby with it. The chances are 2 in 100 women with a positive or abnormal screenings baby's end up with it. It is nothing to get too upset about, but it is kind of hard not to when you are the one carrying the baby and you can already feel it move and everything seems normal with it. I am having a hard time, because my husbands family are not supportive at all about this if he/she would have a birth defect. There support when I told them after the first abnormal reading was "your terminating it right?" I told them absolutely not!!! I just can not believe them people. His own mother and grandmother!!!! I believe God is going to give me whatever he thinks I can handle. That is what I was always told. He wont give you something he dont think you can handle and if he trusts me to have a baby with a disability then I am happy that he thinks that highly of me. I will try to get on tomorrow and update on the ultrasound. Hopefully I will be able to let you know what we are having!!
Anencephaly is a congenital birth defect. While the word anencephaly means « without a brain », it does not accurately describe a child with such a defect. Children with anencephaly do have a brain, but it is not fully developed. A baby with anencephaly is admittedly born with little scalp, cranium vault, or brain, but he or she does usually have part of the cerebral trunk. Your baby's facial features will be complete; however, there will be an opening in the skull. The size varies from child to child. If you look into the opening, you will see some brain tissue. Your baby's head can be covered with a cap if you do not want to see this. There may be other problems with your baby's body (folded ears, cleft palate, open spine), but usually your baby's body will develop normally.
Can a baby with anencephaly live?
During your pregnancy, your baby will receive everything needed through the mother and so grows well, just like any healthy baby. After birth, however, vital functions cannot be sustained for long. Though breathing is often spontaneous, it is not stable enough. Many babies with anencephaly live throughout the pregnancy to birth. Still, some die prematurely while others die during the delivery. This is called stillbirth. Those who survive may live a few seconds, minutes, hours, or even days. Sadly, the condition is not correctable or reversible. Anencepahly is always fatal.
Why does my baby have anencephaly?
First, it is not your fault. From the beginning of your baby's development, before you even knew you were pregnant, the nervous system (brain, spinal cord) did not develop normally. It is thought that this is due to a combination of genetic and environmental factors. Where do you go from here? Your pregnancy can continue normally because your health is no more at risk than it is during a normal pregnancy. In a few cases, the baby is not able to swallow the fluid in the bag of waters so too much amniotic liquid (hydramnion) is produced. Doctors can remove some of this excess fluid. Although some parents choose to end their pregnancies early and thus end their babies' lives as well, babies with anencephaly can be born normally.
More information: Please consider looking at the website
This site contains much information as well as photos of babies with anencephaly, personal stories, and the opportunity to be in touch with other
A carefully considered farewell Anencephaly! To be told that your baby has this birth defect is heartbreaking and shocking. There is no other way to describe this terrible news. Everything you wanted for your babyyour hopes and wishesare gone with the news of this fatal defect. Nothing will ever be the same again. Your pain and grief are very real and very normal. You will not grieve more if your baby lives longer or less if your baby dies very soon. Grief is intense and can't be avoided or lessened. It may, however, be increased. In our experience, we have never heard of any parents who carried their babies as long as they could who regretted that decision, but we have heard of parents who ended the pregnancy early and did regret that decision very much. A carefully planned farewell to your child is the first step you can take to deal with that grief. Take the time to prepare for the birth and death of your baby. Your baby deserves to be welcomed in love and to be given a dignified farewell. Your child is a small human being even if he or she cannot live long.
You can give your baby a name and hold and cradle, Hold your baby in your arms when born even if your baby is stillborn. You can admire and cherish your baby. If you cover the opening on the head with a cap or hat, you can focus fully on your child. Don't forget to take photos and footprints; these will be priceless memories. Unfortunately, burial or cremation costs are not covered expenses in the USA for our babies. But having even a simple memorial ceremony is an opportunity to say a farewell to your baby. The pain felt at the time is very intense, but you will feel that pain no matter what. For closure or relief of grief, it can be important to have this ceremony and some place to feel your sadness. This can be a burial place, a memorial garden, even a small memory box in your home where you put photos or other things that remind you of your baby. This is an official testimony to your child's reality because your baby is a real human being despite the deformity. If your baby is cremated, you may wish to pick a special place to scatter the ashes, a place of comfort and meaning for you.
Will my next baby have a risk of anencephaly?
In most cases anencephaly is an isolated anomaly. It is very unlikely that it should occur again in the same family. Statistically, the rate of recurrence for a woman who has already had a child with anencephaly is 4%. It has been shown that the vitamin folic acid can prevent up to 70% of of potential cases. So, women who have had one baby diagnosed with anencephaly should take 4 mg. of folic acid every day before trying to have another baby. It is important to take this daily because many pregnancies are unplanned.