Some late night thoughts

Late night again! I am not a late night person, early bedtime is my friend. But lately it seems all my good thoughts come at night....or early in the morning around 5am. Frustrating. 

I have all of my little guy's story written down and I want to post it on here. Only problem is that its over 50 pages typed and single spaced. That is how I spent the entire week after Henry's funeral. Typing and typing to get every detail down. I am so glad I did that. The only problem is that no matter how much anyone loves me, 50 pages is a heck of a lot to read. Now I am trying to get an edited version, hopefully much much shorter than 50 pages that I can put here. It's hard though. It is hard for me to keep reading it over and over. Getting my head to go back to that place is hard. It's hard to remember and write down the feelings. The protective walls in my head have gone up to block the raw feelings, to an extent. They will always be there, but they are getting to a functional place. Reading and writing it all down (while very therapeutic the first two weeks or so after Henry was here), is getting more painful. So naturally I have been avoiding it. I am stuck at one place in what I am writing and can't seem to get past it. I want to include every little tiny detail. His life and time with us was so precious and such an incredible experience from beginning to end, that I feel every little detail needs to be given to paint the picture so you understand Henry and so you realize why he is so incredible to me. But it is very emotional. Hopefully I will get somewhere with it soon. 

We went to see Henry today. We go often, one to two times a week. On Mondays we have a family night together there. But my favorite time to go is early in the mornings on Saturdays when Ben is home with Jack and I can go by myself. I take my scriptures and paper to read and write. I love where Henry is buried. I love it so much. Anyone who goes there can see and feel why. It is incredible. The spirit I feel there takes my breath away every time. As I sit there I feel like I am engulfed in a warm hug. My mind is clear, the cemetery is silent and I can think. Inspiration comes to me like I have never had it come. The cemetery is back away from everything, down a dirt road through some farms to the base of the mountains. It is quite, calm and peaceful. It's a sacred place to me. I don't go there because I need the physical closeness to his body, though the thoughts of missing his physical body bring the raw feelings of pain to the surface, but I go because of the calming feeling it gives me. The peace, the love, the comfort. It is one of the very few places I can clear my mind enough to think openly without getting distracted or worrying about silly things in life. I am grateful for this place. It helps me cope. 

We were so blessed to have the service of two wonderful photographers to help us document Henry's life. At the hospital a sweet lady from the organization Now I Lay Me Down To Sleep (NILMDTS) came and took incredible pictures. All the pictures I put up that are black and white were done by this talented lady. I am so grateful for the service. She was able to capture our emotions that day, our joy and love. We also had a photographer at the funeral service. I am so glad I did this! She is a friend from church and took some amazing pictures. I am forever grateful for these! I am looking at them as I type this. I love having pictures of Henry around our home to look at as often as I want. Every time I look at that sweet face, fiery love floods over my body. Oh how I love that boy!

Henry's Journey: An explanation

       I want to start writing about my sweet Henry’s life. Before I do, here is a little background on the condition our baby was diagnosed with. Over the next few blog posts, I will tell about our journey with Henry and his story with anencephaly. Other people’s blogs were literally life savors as we went through this process. I hope this might be able to help someone else faced with a similar situation. It is also incredibly therapeutic for me to document this process. 

When I was 20 weeks pregnant with our second child, we went in for the gender scan and found out our sweet baby boy had a condition called anencephaly. It is a terminal neural tube defect. I have had a lot of questions from people about this diagnosis since it is not very common. We also had some very unhelpful doctors that told us very little about the condition and that immediate abortion was our only option. Doing research on the condition taught us a lot more than they were able to tell us. I am very grateful for these resources. There is a list of websites we found particularly helpful during this process at the bottom of this post. Here is a quick and short Q &A about anencephaly. Information taken from my doctors, WebMD, National Institute of Neurological Disorders and Stroke (NINDS) and www.anencephaly-info.org :

1. What is anencephaly?

“Anencephaly is a disorder involving the incomplete development of major parts of the brain. Anencephaly is classified as a neural tube defect (NTD), and that term refers to the incomplete development of the brain, spinal cord, and/or their protective coverings. The neural tube is a narrow sheath that is supposed to fold and to close during the third and fourth weeks of pregnancy, in order to form the brain and spinal cord of the embryo. Anencephaly occurs when the head (cephalic) end of this neural tube fails to close, resulting in the failure of major portions of brain, skull and scalp to form.” (WebMD)

Side note from me: This does not affect the development of the rest of the body. The baby’s body continues to develop normally. The baby will continue to grow and receive nutrients from the mother to develop like any other healthy baby. Facial features are usually fully developed. The face is developed up until the eyebrows. Above the eyebrows there is no skull. The baby does have a brain stem and part of a brain, it is just not fully developed. The brain is affected differently with each child. My perinatologist told me that since the brain is exposed, parts of it can be eroded away during the pregnancy by the amniotic fluid. 

“The brain is affected to varying degrees, according to the child; the brain tissue can reach different stages of development. Some children are able to swallow, eat, cry, hear, feel vibrations (loud sounds), react to touch and even to light.” ( www.anencephaly-info.org)

2. Are there risks to you?

No, pregnancy can continue as normal without any increased risk. My perinatologist told me that my body cannot tell a difference and views this pregnancy just like any other pregnancy. The only side affect I was told about was polyhydraminos which is an increase in amniotic fluid in the uterus because the baby is unable to swallow it. It can cause preterm labor or your bag of waters to break early. They can remove this fluid by doing an amniocentesis. 

The baby can be born via a vaginal birth or a c-section. There are no increased risks to delivering the baby vaginally. 

3. Is is common?

“An AFP test can be done to detect the presents of a defect, “Such defects occur in about 2 out of every 1,000 pregnancies.1 The chance of a neural tube defect in a baby is not related to the mother's age. Most women whose babies have neural tube defects have no family history of these problems.” (WebMD)

Side note from me: I have read and been told by many that recurrence rate is low, 2-5% after having one baby with anencephaly. It is usually an isolated event. I also read that it is more common in girls than boys. Most of the stories I read about were female babies, not male. Our baby was a boy. It can be diagnosed via ultrasound around 11-14 weeks. My original OB missed it at my 13 week ultrasound and we didn’t have it diagnosed until 20 weeks. 

4. What causes it?

“Neural tube defects may be prevented if a woman takes folic acid before becoming pregnant and during the first 6 weeks of pregnancy. But often a woman does not know she is pregnant until after the first 6 weeks of pregnancy.” (WebMD)

“The cause of anencephaly is unknown. Although it is thought that a mother's diet and vitamin intake may play a role, scientists believe that many other factors are also involved.

Recent studies have shown that the addition of folic acid (vitamin B9) to the diet of women of childbearing age may significantly reduce the incidence of neural tube defects. Therefore it is recommended that all women of childbearing age consume 0.4 mg of folic acid daily.” (NINDS)

Side note from me: I took my prenatal vitamins daily which has 800 mcg (0.8 mg) of folic acid. Many doctors have told me that it is not genetic or chromosomal. How they described it to me was a “fluke”, something that just happens and they are not sure why. Once you have had a baby with neural tube defect, the dose of folic acid increases to   4 mg/daily before trying to have another baby.

5. How long will your baby survive?

There is no cure or standard treatment for anencephaly. Treatment is supportive. The prognosis for babies born with anencephaly is extremely poor. If the infant is not stillborn, then he or she will usually die within a few hours or days after birth (NINDS). This condition is always fatal.

Helpful links:

http://www.anencephalie-info.org/e/index.php

http://www.ninds.nih.gov/index.htm

http://www.webmd.com/brain/anencephaly-10725

http://www.misschildren.org

Three Weeks

Today marks three weeks since my little H came into my life. This time three weeks ago, I was sitting at the hospital. All our family had left for the hotel and it was just me, Ben and Henry. Henry had passed a few hours before. He was dressed in his white and blue polka dot premie outfit, wrapped in the green knit blanket from my sister with a dark navy blue hat on his head. He was in the bassinet next to me in the bed. I raised the bed up so I could reach my hand into the bassinet and lay in bed. The peace and love I felt holding his precious right little hand I love was indescribable. This is the hand I held all night. It is also the hand we were able to get the mold made of with my hand and his. The detail in this mold is incredible. It captures every skin fold, every imperfection, my CTR right on my right hand, Henry's long nails and so much more. His little hand is grasping my pointer finger and my hand is holding his. I love this. I am so grateful for the amazing lady in my life who made this for me. It is precious to me. It sits on my desk as I type. This may sound silly, but every time I touch his fingers I get this deep overwhelming feeling of love, peace and calmness. Henry centers me. 
Though I ache for him in a way I can't describe, his spirit is so strong in my life. For that I am grateful. Happy three weeks my sweet Henry! I love you eternally. 

My three boys

                                                This picture brings pure joy to my heart. 

A weekend

This weekend has been a nice break. Ben's company flew us to Seattle last night for a company anniversary celebration then put us up in the hotel for the night. Jack went over to Rachel's (thank you!!) and had a sleepover with his best friend. She said they had a blast and crashed hard around 830 haha. We flew back this morning. Seattle is so pretty! I haven't been to downtown Seattle is years and years. We took the light rail from the airport to downtown which was nice, clean, and speedy! Not like the ones we have here in LA. Ben was also glad we didn't have to do much walking since earlier that day he had just run his first marathon!!! SO SO SO proud of him!! He has beed training for this for a few months. He ran it in 2 hrs and 15 minutes, which I thought was pretty darn good for his first half marathon. We also had some shirts made with Henry's name on them, his footprints and a saying Ben likes from a talk by Elder Bednar "Not shrinking is more important than surviving". Ben, Jack and I each had these shirts. I'll put a picture up. We went to cheer on our runner. Jack had fun yelling at all the runners (encouraging words only of course ). It was a beautiful day. Love all my boys :-)

A midnight post

I can't sleep again. I was tired until I sat down here and started writing. I can't stop writing. For some reason I feel like every thought and every feeling I have needs to be written down. I have had so many thoughts, revelation and eye-opening experiences over the past two weeks that my head cannot hold it all in. I have already written over 50 pages in these past two weeks! For me, that is quite a bit. I am not so great at journaling.

Just a few thoughts I want to put on here before I go toss and turn in bed more. Though the last two weeks have been the hardest in my life, I am so grateful. I am grateful for my amazing family. I love them. They support me in a way that no one else can. My sister is in my soul. She is half of me.
I am grateful for my friends. They know what I need. They help without question. They talk to me for hours. They make me laugh and have fun. They are my family out here where we have no actual blood related family. I am grateful for Heavenly Father. I am grateful for this trial. There are people that have been through so much worse. I am in awe as I read their stories. They made it through, so can I. There will be more trials, more tragedies in my life. I am grateful for my sweet Henry. He has opened my mind up and my heart in a way only he could. His pureness and peace is felt every time I think or look at a picture of him. I miss him, I ache for him, I cry for him. But my mind is at peace. I know his spirit is incredible. I feel it. I feel him. I feel his influence in my life.

I love Ben. Words do not do it justice. He is my rock. My love. I love my Jack . He gives me love like no one else can. I am so blessed to have them in my life and truly feel joy with them.

A song

I am loving the words to this song right now. Called "I won't give up" by Jason Mraz. It really makes me think about Henry. I won't give up on us. 

When I look into your eyes

It's like watching the night sky

Or a beautiful sunrise

Well there's so much they hold

And just like them old stars

I see that you've come so far

To be right where you are

How old is your soul?

I won't give up on us

Even if the skies get rough

I'm giving you all my love

I'm still looking up

And when you're needing your space

To do some navigating

I'll be here patiently waiting

To see what you find

'Cause even the stars they burn

Some even fall to the earth

We've got a lot to learn

God knows we're worth it

No, I won't give up

I don't wanna be someone who walks away so easily

I'm here to stay and make the difference that I can make

Our differences they do a lot to teach us how to use the tools and gifts

We got yeah we got a lot at stake

And in the end,

You're still my friend at least we didn't tend

For us to work we didn't break, we didn't burn

We had to learn, how to bend without the world caving in

I had to learn what I got, and what I'm not

And who I am

I won't give up on us

Even if the skies get rough

I'm giving you all my love

I'm still looking up

I'm still looking up

I won't give up on us

God knows I'm tough, he knows

We got a lot to learn

God knows we're worth it

I won't give up on us

Even if the skies get rough

I'm giving you all my love

I'm still looking up...