Too perfect for earth

Tuesday, October 19th, was mine and my husbands 1 year wedding anniversary. We've been together for 4 years and married for 1 of those. This has been such a challenging year for us. We lost our jobs in April, we received the diagnosis that our beautiful baby has anencephaly in June, we lost our house in August, we lost our dog in September and our other dog was attacked by two dogs and barely survived, also in September.
I love my husband so much. He is my rock of strength.Our marriage has become much stronger and we have become much closer.
I realize now more than ever how fragile life is and how fast it can be taken away. I try to make sure my family knows that I love and care for them so much. I probably hold on too tightly because I am so afraid to lose them too.
I remember getting the phone call from the nurse about my triple screening blood test. She said I had elevated levels for trisomy 18. My mom and sister came over right away and I was calling my husband, he was out of town on that day. I started looking up trisomy 18 and what I read was horrific. I read that babies affected by this, usually don't make it past their first birthday. My mom took my phone and told me to stop looking it up. I also saw anencephaly, but I just glanced over it. Then later finding out that our baby has anencephaly, which gives our baby a survival rate of minutes, hours, a few days, if we are lucky---just became so much worse than what I had originally thought. They are both fatal and just as horrible but trisomy 18 would have given us more time with our son.
Wednesday, October 20th, we went to our Dr in Hays. He checked my cervix to see if it was dilated. Ouchies!!! It isn't dilated, which is great news. I asked a lot of questions about what happens when Kolton is born, what measures will be taken, and what options we have. He told us that he will do whatever we want to do but the end result will be the same. He said babies with anencephaly die from infection because of the open wound in the head.
First option: He said he can dress the wound and give antibiotics to fight the infection. They would give him a feeding tube so that he doesn't starve. It's just prolonging the inevitable but it would give us more time. He said it could give us weeks and months with him. Of course, I want to do everything that I can for my son. I want to know as a mother that I did everything I could, within my power.
Second option: Is providing Kolton with comfort and care and not taking extra measures to prolong his life. The Dr said that he would personally choose the second option because he would want to be able to bring his baby home.
I have read conflicting things: that a baby with anencephaly usually goes into cardiorespiratory arrest and that is how the baby dies, or the brain stem fails to support vital organs and the baby "forgets" to breathe and that is how the baby dies, or that an infection sets in very rapidly from the open wound. I just don't know what to think. =( I want as much time with my son as I can have, who wouldn't want that. I want to do anything that I can for him. Where is the invisible line that seperates being selfish and doing what one should? Where do we stand as parents when we are having an angel for God? What choices do we really have?
I know where my heart stands-and that is to fight for my son. We will give him to God either way but I need to know that I gave everything I could for him.

[Update:] I bought 2 bears from bear regards and recorded Kolton's heartbeat. One for Lex and one for Kelby and I. On one of them, it was shorter than the other, but Kolton kicked during it. =) So precious.
My sister gave me this idea, so I want to buy Kolton a Kansas City Chiefs jersey because his Daddy is a huge Kansas City Chiefs fan. I think that would be really special. =)
I made Kolton's Cd.
1. Elizabeth Mitchell- You are my sunshine
2. Rocket Club- One more day (In Faith)
3. Selah- I will carry you
4. Dixie Chicks- Lullaby
5. Diamond Rio- One more day
6. Mercy Me- Homesick
7. Natalie Grant- Held
8. Kenny Chesney- Who you'd be today
9. Alabama- Angels among us
10. Marc Cohn- Butterfly Kisses
11. Steve Curtis Chapman- Heaven is the face
12. Patty Loveless- How can I help you
Making this CD opened the floodgates for me.
((I actually changed a couple of songs on this Cd).
Thank you Lindsey, for sending me that Selah CD so I could put "I will Carry you" on it. Thank you for raising money for Kolton. You are a god-send and the best friend a girl could have. =)

We received a beautiful hat and a card in the mail from a wonderful family, the Lundell's. They just had a baby Angel, Jack. I want to thank them for sharing Jack with us. He's such a beautiful little Angel. Thank you so much!

I have been suffering from a miserable cold, for the last couple days. I called the hospital to see what medicine I could take, they told me tylenol cold, robitussin dm, benadryl, or vicks cough syrup. They said do not take multi-symptom forms. So, my husband and I went to walmart and there is a sign taped to the shelf where the cold medicine is, it said that they are out of certain medicines due to manufacturing difficulties...imagine that every medicine I could take was on that list and they didn't have any..we bought some cough drops and left. We got home and searched the house top to bottom for my benadryl medicine and couldnt find it. My sweet husband, who was in his jammies and ready for bed, went to Presto convenience store, and bought 3 boxes of 2 pills each for $2.09 a box. (Did I mention how amazing my husband is.) The next day, he went to Kabredlos after he took Lex to school and bought them out of the Tylenol Cold Head Congestion medicine, which cost him over $16.00. They are boxes with 4 pills in each box and $2.09 a box. (absolutely ridiculous!)
So, I took those every 4 hours yesterday. Then I look it up online to see why pregnant women can't take multi-symptom cold medicine, apparently there is a medicine in them- Phenylephrine- that cuts off oxygen to the baby. That happens to be in the Tylenol Cold medicine that I was taking! That really really scared me. He was kicking all night, so I know that he is okay. It's just scary to take anything, even things that Dr's say are okay to take.

I am sure that I have forgotten to write some things down, I have pregnancy brain and forget everything, lol.

Rocket Club - One More Day - Official Video

You are my sunshine

We went to see our Dr in Hays today. We are 33 weeks + 2. =)
I was hoping for an ultrasound to see our little guy, but not this time. The last ultrasound we had was so amazing. We saw his mouth and his nose. His little tongue was moving. We saw his little hands and feet. :) So precious. He kept putting his hands in front of his face. Apparently, he doesn't like having his picture taken. lol.

Today, the Dr came in and we went over routine questions. He momentarily forgot that our baby has anencephaly and asked if I planned to breastfeed or bottlefeed. I just stared at him and wasn't sure what to say. It took all the willpower that I could muster to keep myself from breaking down in tears. I would love nothing more than to breastfeed and for this all just to be a bad dream. I would love to be decorating his nursery and buying little boy outfits and onesies. I would love to watch him grow and see if his personality is like his daddy's or like mine and if he acts like his big sissy did when she was a baby. I yearn to hear his first words, see the accomplishment in his eyes when he starts to crawl, and guide him through his first steps. I want those sleepless nights spent up with my crying baby. I want to change those dirty diapers. I want to be thrown up on---All of this means that I would be keeping my baby. What I wouldn't give for that. I always used to pray for a miracle and for God to heal our baby (I still want that). Kolton is our miracle though and God's form of healing may be taking Kolton home with him. I wish for things like him being born alive and him being alive for a long time, to meet his family who so eagerly await his arrival--as long as God will allow.

I wish I could understand why this is happening. I am always questioning. Why Us?? What did we do so horribly wrong that you have to take our baby away from us? Then I get to thinking about how God gave up his son and I know that he understands. I just wish that I could without any doubt in my mind.

I got a flu shot today and finally bought some maternity clothes. I know you are probably wondering why I would wait 8 1/2 months to buy some. =) Well, I am seriously running out of clothes that fit. I didn't buy maternity pants so my husband will just have to deal with me running around in my jammy pants. lol. It would probably be alright to him if they weren't mostly bright pink and bright green. =) I can be very colorful and I am not sure he appreciates it as much as I do. lol.

<3 Baby Kolton <3 your Mommy, Daddy. and your Big Sissy love you.

Shannon Moran Brooks made this for us. =) Thanks Shannon! love you

How long do you wanna be loved? Is forever enough because I'm never never giving you up

It has been a really rough week. I know that the time is drawing closer and it's just breaking my heart. I am not ready to let go of my baby boy. I can't pick my daughter up from school without bawling my eyes out. I read a Hallmark card a couple of days ago and afterwards, I just laid in bed in my husband's arms and cried. I've been such an emotional wreck.

My dear husband called our local Dr and asked if there was safe medication that I could take to help. They prescribed Zoloft, which has been proven to cause septal heart problems in the infant when taken during the second half of pregnancy. I'm not taking that...are they crazy?  Regardless of what they think of our baby's prognosis, they need to treat this pregnancy like any other pregnancy. If they wouldn't prescribe that to a pregnant woman whose baby has no known problems, then why would they prescribe that to me??? Just because our baby has a fatal anomaly does not make it justifiable. He is still our beautiful baby.

I am compiling a musical selection to be played at Kolton's funeral. It's very challenging not to break down. I wish I could find the song that I wanted the most. I will carry you- Selah.

32 weeks

 

32 Weeks!! 

I am 32 weeks pregnant today. 8 months!! I cannot believe it. The time has just flown by--right out of our hands! It scares me because I am not ready to lose my little guy. :( I feel so helpless as a parent because parents are supposed to protect their children. There is nothing that I can do to save my little boy.


Today, we went and bought the rest of the burial plots. So that when our time is up, we can all be together as a family. Then we went down to the funeral home and paid them some money for Kolton's funeral. What an upsetting way to start the day. The funeral director recommended that we do grief counseling now before little Kolton gets here but I don't think that I can do that while I am still pregnant. I want to enjoy every moment and keep the sadness at bay. I don't need to be bogged down with grief, though I know it is already there; I just refuse to acknowledge it right now. There is a time and a place. Now is not that time.

There is so much that we need to do and I can feel the time just slipping away! We need to buy Kolton a new tux, since he has already outgrown the original one we purchased. =).We also need to order new necklaces that do not have a set date on them. We need to make a cd for him. We need to meet with a minister and decide how we want his funeral to be. How horrible is it to plan a funeral when we eagerly await his arrival...We wish that he were allowed to stay with us longer but that choice was not ours to make. I pray that we get time with him, that he is born alive and is able to meet his family that loves him so very much.

"There's an elephant in the room.

It is large and squatting, so it is hard to get around it.

Yet we squeeze by with, "How are you?" and "I'm fine," and a thousand other

forms of trivial chatter. We talk about the weather. We talk about work.

We talk about everything else, except the elephant in the room.

There's an elephant in the room.

We all know it's there. We are thinking about the elephant as we talk together.

It is constantly on our minds. For, you see, it is a very large elephant.

It has hurt us all.

But we don't talk about the elephant in the room.

Oh, please say his name.

Oh, please say his name again.

Oh, please, let's talk about the elephant in the room.

For if we talk about his death, perhaps we can talk about his life.

Can I say his name to you and not have you look away?

For if I cannot, then you are leaving me....

alone....

in a room....with an elephant."

I have met many people along this journey. Many people who are on the same journey and those who help people during this very difficult time. These people have become my family and I am so grateful to have met them, though I wish the circumstances were different. I have learned to take it a day at a time. Cherish the little time that you do have because it can be ripped away from you in an instant. Do not take anything or anyone for granted because no one is promised tomorrow and all it takes is one second and your world can change forever. I love my family and friends more than words could ever say. I hope and pray that I don't let a moment pass for me to tell them how much they mean to me.

Due November 22, 2010

We found out I was pregnant when I was 9 weeks along. We were both very pleasantly surprised. I was beginning to think that I couldn't have any more children. (I have a daughter, Alexia,  who just turned 10 this month!). I felt so very blessed once again. We immediately picked baby names. I wrote down the ones that I love and gave him the list and told him to write down the ones that he liked. Instead, he took my list and picked out the ones he liked from it. He said Kolton for a boy and Addison for a girl and the middle name will be Sage. =) Perfect.

We did our triple screening testing when I was 16 weeks along. Two weeks later we got the results back. I tested positive for Trisomy 18, with a ratio of 1/62. My heart dropped. We immediately scheduled a specialized ultrasound and possible amnio in Denver for a few days later. We were told by several people not to worry because a lot of people get false positives. We were very hopeful that this was also the case for us.

On June 23, 2010, our lives drastically changed. Nothing could have prepared me for this day. The ultrasound tech looked over our baby and spent a long time trying to find his head. She said, "I can't find your baby's head. I don't think your baby has a head". She left the room to get Dr S. Our daughter said, "the baby doesn't have a head?" I couldn't believe what I was hearing. Tears were just rolling down my cheeks. I remembered how so many people asked me if I wanted a boy or a girl and I would reply, "as long as the baby is healthy, it doesn't matter what the gender is." It seems that dream came crashing down on top of me.
The Dr came back in and took a look himself. He said, "Your baby is incompatible with life. The baby has anencephaly, which means the top part of the head above the eyebrows never developed. The baby won't live long after childbirth if he survives the childbirth process. I recommend that you terminate and we can do that right now. Would you like some time to talk about it?". He lead us to another room, where we were just too shocked to speak. We were so lost.
He checked on us several times within the next half hour. I asked him, "can you tell us if we are having a boy or a girl?". He said, "It looks like it's a boy". He explained to us how he can still grow and have a heartbeat without having a brain. It's because of the brainstem that is located at the top of the spine.
How could we be put in this situation to make a choice and have our baby die now, or carry him and have him die later. I don't want him to die at all. I wish he could stay inside of me where it is safe. When I think of making choices for him, I think of what outfit he will wear when he comes home from the hospital. Not die now or die later. :(:(
[[This whole time my husband was right. He was so determined that we were having a boy. I kept having dreams of a baby girl so I was sure we were having a little girl. lol.]]
We talked and he called his mom. We wanted to carry our baby to term. This is our son!! We wanted to give our son a proper burial. We told the Dr of our wishes and he gave us his card and told us to keep in touch if we changed our minds.

We drove back home in a fog. How does one process the news that their baby is dying and their is nothing that they can do to save them?? We had to go in for a follow-up visit with our original Dr. (Dr D).
We told the Dr what Dr S. told us and that we wanted another opinion. We did another ultrasound at the hospital. I told the ultrasound tech what Denver had told us. She didn't know what it was so she typed on the screen Possible Fetal Demise. She said our baby doesn't have a face or a back to his head or a top to his head. But I knew he had a face because I could see it. Dr. D came in to go over everything with us. He said that he wouldn't be able to deliver our baby because he wouldn't be comfortable doing it. Regardless of when we chose to have him. He was in tears. We left and he later called us and told us that we should terminate because there are so many complications if I carry full term. The complications consisted of too much amniotic fluid, due to the baby not being able to swallow it and that would cause my kidneys to fail...etc. the list goes on and on. That really scared us so we thought of inducing early. I read that a healthy baby born at 26 weeks would have a 90% survival rate. I wanted to believe that the Dr's were wrong. When Dr. S called me, I told him that we would induce but it would be when I was 26 weeks along. He said why so long? I told him about what I had read and so we set it up for August 19, 2010.

We went to Bateman's funeral home to start making funeral plans. It was the hardest thing I have ever had to do but I wanted to do it now, because this is the only thing that we can plan for him and I want it to be perfect. We then picked out burial plots for our family. We ordered Kolton a white tux with blue lapels to wear in micro preemie size. We ordered memorial necklaces. One for each of us: Kelby, Alexia, Myself, and Kolton. We bought concrete molds to get hand molds and feet molds. We bought two baby blankets, whom a friend's mother embroidered his name on. I contacted a Now I Lay Me Down To Sleep photographer (http://www.nowilaymedowntosleep.org/) and arranged for pictures to be taken.

About a week later, a couple friends gave me the name and number of a good Dr. in Hays. Dr. F. I called and asked his nurse if he had ever delivered a baby with anencephaly before. She told me that she would find out and call me back. She called back right away and we set up an appointment to see him .

At our first visit with Dr. F, he came into the room and he said, "You have choices. I don't know what you have been told but you have choices." We told him everything and he said it was obvious that we wanted to give our baby every chance possible. He said, "I urge you to carry to term and I would love to be able to deliver your baby for you. I want you to have the chance to say--we have two children; a daughter and also a son that we didn't get to take home."

We have a better peace of mind now. We have a Dr that treated our baby like a baby should be treated. A perfect beautiful blessing. He told us that when we go into labor to just start driving that way. :-/. It's 2 hours away!! So I hope all goes well when November rolls around!!

At 27 weeks, I went into preterm labor but they were able to stop my contractions. I was put on bedrest and they stopped completely. Very thankful for that!!!

We are at 31 weeks right now and cherishing every kick and jab. He is a very active little guy. He showed his big sissy that when she was laying with her head on my tummy! He kept kicking her. lol. She had to move because she couldn't hear the movie.

You never know what strong is until being strong is the only option. This journey has been a roller coaster ride. At times I fall to pieces. When I talk to other anen families I fall apart. I try to stay positive and strong because I want Kolton to feel nothing but love. I don't want him to know of grief or sadness. I just want him to know how loved and precious he is to us.

We are so thankful for our family and friends. For without them, I am not sure how we would be able to get through this.